After the loss of my Clyde in December I realised how blissfully ignorant I had been of how unfortunately common pregnancy and infant loss is. Of course I knew and had a few friends who had sadly walked that journey, yet I was still so unaware of how walking that journey feels. Once I joined the angel Mumma club, I realised how silenced so many women and their families felt. How even people close to me, suddenly avoided me, when all I wanted was to tell my birth story, and be congratulated on the birth of my son, just like every other mother out there. But it was something that was seen as taboo. People didn’t want to hear my story, because it was too uncomfortable. I felt so invalidated as a woman and as a mother. Like my birth didn’t matter. Like I wasn’t a real mum. It was then I started to really realise how many women really have to go through this. How many don’t often speak their child’s name for fear of making others uncomfortable. I was suddenly driven by this huge desire to work on a project to give these incredible women a voice, to speak their babies names proudly, to be congratulated on the birth of their beautiful babies, to celebrate them for the incredibly strong women that they are! And so my Angel Families Project was born! I was on a mission to make my son proud of me and try and make the topic of pregnancy and infant loss a less taboo subject. I wanted to be able to scream the names of all these babies!
So after lots of back and forth with lots of women, and reading over 600 heart breaking stories, my first group of mummas was brought together on a rainy and cold April afternoon, to share stories and honour our angels!
After a text book pregnancy with my daughter, I didn’t expect anything different for my second pregnancy. But that wasn’t the case.
My waters broke at 22w2d and we were told to expect to go into labour. That gestation isn’t classed as ‘viable’ so there is nothing they could do if our tiny baby was born.
But he held on. I was admitted to hospital on strict bed rest and antibiotics but eventually infection got in and contractions started at 24w5d. Making sure we ticked all the boxes, his cord had prolapsed so he was coming, quickly! I still remember looking into the anaesthetists eyes as I went to sleep and hoping we’d all wake up ok. We did. He made it. Our tiny Finn was 700gms but he made it. I was wheeled into see him and fell instantly in love. He was tiny, so fragile and there were so many cords and machines.
For the following two weeks I fought a serious infection (that caused labour to start) while the lab tried to find an antibiotic that would work. While our son fought for his life, I recall one night, with a temp over 40’c, asking my own Dr if I was going to die!
Finally I was allowed home and I realised I was leaving without our baby. That’s a hard fact for so many people.
We treasured our cuddles, we read Finn books, we took photos and videos, we held his tiny hands, but no love in the world was enough, his lungs were too tiny and at 24 days old we held him tight and said our last goodbyes.
When you lose a baby, you lose their whole life. No first words, no favourite foods, no giggles, no first steps; you lose a lifetime of memories.
We’re eternally grateful for the 24 days we got with our brave boy. We’re very aware that we almost didn’t have this time and so many other families don’t get this time.
Not a day goes by where we don’t miss Finn, I talk to him daily and I sense when he visits me.
Candice’s photo shoot day was a group no one ‘wants’ to be a part of, but it was so lovely to meet other mums in similar situations and talk about all of our babies.
We love you Finn, love Mummy, Daddy, Grace & your new baby sister xxxx
I’ve been wanting to share “our story” for awhile but haven’t known where to start.
I think most people who know me, know I’ve always had “a plan” to start a family – the where, the when, planned down to the tee.
I thrive off a life structure, knowing where I am going and when I’ll get there.
2020 was our when, the year we would start the next chapter of our life and start a family.
Around April/May we begun trying, full of high hopes and optimism; I still remember hearing a friend say “I fell first go”. As months went by without seeing those two double lines I started to feel super overwhelmed and distressed that “something was wrong with me”. By September I was seeing a Psychologist.
October I made the call that it was time to give it a break, I was completely beat.
By November we had started again, not tracking as frequently, trying to let things happen naturally “what’s meant to be will be” – ew not my style. My “when” had sailed, as to be honest I’d planned on a March baby, a pisces like myself.
December came around and I hadn’t done a test knowing my period was due but just trying to “let go” of some control, however Tom was also booked in for a referral for a sperm count – obviously I wasn’t letting go of full control.
On the morning of Toms GP booking for his referral I look a test, leaving it the exact amount of time before checking it. Upon looking at it I was confused “could it be”, I remember reading the box like a million times like “there just noway, it has the be a mistake”. I was so shocked that I went to work wondering “am I or not” when I clearly was. I raced home at lunch to take another test just to be sure, and FINALLY I was.
I waited out the front of the GP for Tom to arrive before showing the picture of the test “I’m pregnant”, I think I remember him looking at me like “wtf” – I followed with “I’m here to take your appointment and get blood tests”, finally all the hard work had paid off – I know I’m making it sound like a full time job, but at this point it was.
On the 20th of December, we decided to tell our family the exciting news (5 weeks at this point), I’d bought a special bottle of wine and had a label made up “Baby Stash arriving in August”. Everyone was so excited, so many tears so much hugging – everything was perfect.
The following week (6 weeks exactly), I was interviewing for a new role – the role I had wanted for some time however was feeling extremely guilty about applying for knowing I was now pregnant.
I sat in the waiting room revising my lines, questions, answers and decided to go to the bathroom. I wiped and blood came away, I was worried but I knew I needed this job, so I returned to the waiting room and held my breathe. My name was called, I interviewed and gave it 200%, I walked back to my car called my Aunty crying about the blood. She assured me that if there was no pain it was mostly just old blood, however I knew – it was red, bright red. By the time I had returned back to work, I was cramping. I told work I had to leave went straight , called Mum and Tom, and drove to the hospital. Crying as told them “ I think I’m having a miscarriage”.
I was bought in, handed a very large pad, and told to return to the waiting room.
Tom and mum arrived shortly after. Tom saying “it’s ok, it’s probably nothing”, but I knew.
Eventually I was seen by a Doctor, bloods were taken and I was told “if you are losing your baby there is nothing we can do to stop that” and the “stenographer won’t be back until the morning, come back than”.
So I went home, and the following morning went to the toilet where I believe I had my first baby.
I returned to the hospital the following day with Mum and Tom. I was asked to come through alone (due to COVID) where they would check the baby.
The screen remained off, whilst the stenographer looked around – again I knew.
She turned the machine off, looked at me when i asked “where is my baby?”. She said I’m sorry.
I returned to the waiting room sobbing that our baby was gone.
A conscious decision was made by me at this point that we would not try again. Our hearts and dreams were broken beyond belief.
After the miscarriage I bleed for about 6 weeks.
When it finally stopped, Tom and I did it once. On Anzac Day I took a test and was shocked to find out that we had fallen with rainbow baby (Vance).
I was so concerned the first 6 weeks, that was my mile stone “if I can just get past 6 week,” than I moved on to “once I get morning sickness”, than once “I get to 12 weeks”.
At around 14 weeks the sickness passed and I was finally able to start enjoying things a little more, I felt like I had passed the safe zone.
One of my favourite memories:
16 weeks – I was heading out and finally decided to wear something tight. As I was leaving Tom was getting home, he stopped, looked at me, and said “omg you look so beautiful” and I still melt everyday thinking about it…
At halfway I had basically forgotten about their even being a “safe period”.
However there was one moment.
I recall hearing about Emilee Hembrow’s loss (stillborn) Baby – Jamal. I told my best friend “I am worried, I cannot imagine this, how heartbreaking”, but the moment was fleeting and before I knew I was in my last trimester and completely over it. I was huge, uncomfortable, not sleeping, nothing fit me etc etc etc.
On Friday the 16th of October, Mum and I visited Pillowtalk, we dropped my work belongings back to my Colleague, went and saw my Mother In Law at work and returned home. That night I started to get a pain, and I remember saying “ooooohhh this might be it – jokingly” as at this point I was 40 weeks and 2 day, 3 stretch and sweeps later and thinking that Bub (Vance) was never coming.
Well soon enough the contractions started. – very sporadically – 2 mins, 7 mins, 15 mins, 20 mins which went on for 2 days.
Being apart of the GMP I was told to labour at home until contractions were consistent and close together (5 mins apart).
By Sunday morning 17th of October I was falling asleep in the bath. A decision was made that it was time to go to the hospital.
We got the the hospital and went straight through to the birthing until – bed 4 they said, Tom and I looked at each other because that is his favourite number and that could only mean good juju.
My midwife arrived, I was checked, belly monitored – everything fine other than my contractions were still all over the place (not consistent).
I was 4/5cm, and decision was made to break my waters – where we monitored for another hour to check if my contractions would become regular – they didn’t.
As a result induction was commenced at around 9am.
I laboured in the bath most of my time, by 5pm a decision was made that a cesarean was needed.
Spinal block in, and finally I was able to open my eyes. I was so excited that I was going to be present for Bubs (Vance’s) arrival… but little did we know.
A bandl’s ring has formed making it very hard for the removal of Vance.
Vance was born still on the 17th of October 2022 at 6:24pm where he was resuscitated until 6:48pm.
8 pound 4, 53cm – absolutely perfect and everything we could of dreamed of and more.
We love you and miss you ever second of every day, our baby, Vance Jacka Stashynsky
Oliver James Keast
Early February I did a test and as we waited anxiously, then there it was pregnant! John was overjoyed and for some reason I had burst into uncontrollable tears which worried John. Looking back I think it was my instincts.
I have something called Incontinentia Pigmenti – a rare genetic disorder which is x linked, and unfortunately fatal to males. I wasn’t too worried because it was 50/50 and also the ‘It won’t happen to me’ thought. In saying that I was too scared to buy anything -I have no idea why I felt I had to walk on eggshells. The all day sickness got me only eating Arnott tea biscuits, though the cheeky bugger would only let me feel good when John had his arms around my belly… Definitely was a Daddy’s boy.
During the 13 week scan they had discovered fluid in Oliver’s hearts and lungs, and I remember us giggling and enjoying seeing the little man just going nuts in there, oh boy he was active. Suddenly went quiet and then these words “I just need to get another’s opinion.” My heart sank. I laid there with a few little laughing comments on how active he was and after what felt like hours I turned to John and said “there is something wrong, it shouldn’t take this long” with John reassuring me it’s all good, I still had this sinking feeling something was wrong.
When she came back in she had brought a doctor. She introduced herself and took a look at bub, then she sat down and said that unfortunately bub was carrying a lot of fluid in his heart and lungs and that we could do more tests via a CVS which is a large needle into the womb
to the placenta and takes some of that out so to test the chromosomes, his fluid is called Fetal Hydrops which is usually a side effect of a missing chromosome.
We sat there taking it in, leaving us to talk about the decision to which we had no idea what to do for which we ended up deciding to do the CVS which was done right there, we had the screen on so we could see bub and he moved so far away from that needle! Not going to lie, it hurt! The doctor said that with how much fluid he was holding she didn’t expect him to live longer than another 2 weeks. Our tests slowly came back, we found out he was a boy which I had known, first lots of chromosomes were perfect. We both thought that he’ll be FINE, he’ll get through this.
My husband works away so he was usually away for a week at a time, I remember a few days before we found out he passed I was singing to him in the car and I felt a flutter a few more hours later I had felt it again, it was such a magical feeling at this point i was about 14wks and 4 or 5 days. On Anzac day my sister inlaw took me to the parade and as we were watching I started feeling a little funny, dizzy and sick. She took me home and I decided I needed to lay down, I woke up feeling not pregnant which worried me but I shrugged it off with ‘Maybe it’s just a second tri thing’ but I couldn’t shake this off feeling. Waking up the next day for our follow up ultrasound, John just made it back in time from Perth.
We couldn’t wait to see our little man, got on the screen and there he was, perfectly in the middle, we both mentioned how he was a little more calm this time – Probably sleeping, we said. Then we heard it “I’m sorry but this little bub doesn’t have a heartbeat anymore” we just froze….. In disbelief. After that it was honestly a blur I just remember feeling numb and trying
to still do paperwork and organise birth for our passed child. I don’t remember it, I remember calling my mum to tell her and I just burst out crying so my poor husband had to finish that conversation. The drive home I asked John if his heart could start again because he was still safe in my tummy… I was so desperate to not believe it. We went to the shops to get birth pads and we turned down the aisle and BAM baby nappies, food all that, we laughed because we survive through our sarcasm and we said “Well that’s ironic”
It was a week before we had to give birth, in hopes he would come out himself,I remember screaming why my baby? Why did we have to lose him? I remember just being in such denial that his heart would beat again. It came to the day to take the first tablet, this is the tablet that’s taken for abortion, thankfully my mother inlaw and husband came with me because as soon as I reached the desk I couldn’t say the words, I froze and couldn’t get the words out and burts into tears. How was I meant to ask for a tablet that was for abortion? I didn’t want to give my baby up! Before I took it they let me have another scan to confirm Oli was no longer with us, he was on the floor of my womb this time. This tablet was to start the process and then I had to come back in 2 days to take the 2nd one and begin birthing Oli.
Any way Wednesday comes along, the day to give birth to Oliver, I was exactly 16 weeks and my body was still growing and doing all the pregnancy things due to having a missed miscarrage my body still thought I was pregnant. John’s mum, John and I walked into the John Hunter and another irony we had a lady in labour in front of us the whole time so stairs
to the birthing suite it was! First tablet was taken not orally, very uncomfortable let’s say that and now to wait, had to stay in the bed for half an hour before I was allowed to move, my stomach started to feel weird and down there was feeling really, really strange, coming up to 1:30pm -we arrived at 9am. It was time for the second lot of tablets which brought on a whole lot of back pain and the beginning contractions which brought a nice sway to me, as this was all going on we had to talk to our social worker, do we want a funeral, how we want him buried and so on.
I don’t know, I wasn’t planning his funeral I was planning his LIFE!! She told us that we had 2 weeks to decide what we wanted to do regarding cremation or burial. It helped to have time to think about it as we weren’t planning his funeral so I had no idea. Anyway the midwife asked me what pain threshold I was at, I said about 4-5 (out of 10) and she said “you don’t have to be brave, you can take drugs to help with the pain” after everyone telling me to have them to help I caved and said yes, she went out to get them to set it up and my pain went up to about a 8, hubby rubbing my lower back and I suddenly whispered “uh-um, babe I think I just wet myself, like niagara falls style” the midwife walking back in I looked at her and said “I think i just pee’d, like a lot.” She rushed over and moved me into position saying “I’m sorry Sarah, it’s happening now and very fast. Bub is coming, you need to push”
I could feel him, and following the contractions I pushed, they said one big breath, so as I was trying I nearly fainted, not really remembering to release the breath I heard Sarah breathe. I remember feeling a sharp, stinging rip which was my placenta ripping from my cervix due to the placenta not being fully developed – Oliver arrived at 3:05pm on the 3rd of May in room 3. Our midwife had to explain how Oliver looked before giving him to me to hold on my chest. He was 9.5cm long and 200gs. I couldn’t get all of the placenta out so I was to go into Theatre for a D&C at 10pm. They came to take me into surgery and the man rolled
me away and asked “What did you have?” I was startled, he didn’t know “A little boy” and he replied with “Oh Congratulations, is he your first” I could only reply with “yes, he was. When I started waking from the anaesthetic I remember feeling tears on my face, my throat feeling raw and sheer panic of where is my baby? Is he okay? Where is my Husband? But I wasn’t able to get those words out, it was just more tears. I didn’t remember why I was there and had to relive it all again. They rolled me back to my husband who was pacing the hallway mind you and I was just so happy to see him, and his words of “it’s okay baby, I’m here and I’m not going anywhere” I wanted to reply with I want a hug but what came out was “I’m going to be sick”
That night I didn’t get any sleep with hour checks and missing my baby, the next morning the midwife sat down and asked me how I was feeling and all I could reply with was “I’m here and my instincts are screaming at me to check on my baby and make sure he is okay, but we both know I can’t do that, because he isn’t there to check on” and then we both cried. “I just want him back”
Arthur Max Keast aka Lil Bear
We had been trying for about 13 months, I decided that it was time to talk to our GP to find out what’s going on with my cycle since having Oliver really my cycle was never the same, it kind of settled after Wesley but still I wasn’t ovulating all the time. So we had the line up for blood tests but I had to wait till my cycle day 21, although it didn’t seem to come, I had a period that lasted 15 days so I was unsure what to do and then my next period never came. I didn’t think I would be pregnant as well 15 days of bleeding and not many times trying it didn’t seem like I would be. First day of my last period was on 24th October, I ended up doing a test in the 2nd week of December and it came back as a positive. I actually had the same reaction as I did with Oliver, it worried me but I shrugged it off.
I organised to get a plaque made with ‘One more to adore’ on it to add to a little romper for hubby to come home and see. We were stocked, we waited a long time having to delay trying to conceive due to my back issues (2 lower herniated discs) Finally another baby! I wasn’t as sick as I was with Oliver, but more than I was with Wesley and extremely tired, I felt off most days. The dating scan came up and all the anxiety that came with me and scans rushed back and slapped me, but his heartbeat was strong and was reading 2 weeks behind what my period was saying. Went from thinking I was 7weeks to 5 weeks.
The doctor organised the referral to John Hunter and we awaited the booking date but in that waiting we organised with Hunter Genetics to get a NIPT test done to check bubs chromosomes and sex. This is usually done 10 weeks on and is not invasive like a CVS I had with Oli, this is done by bloods. I got it done at 10wks and 2 days in January. Still awaiting the hospital appointment, my NIPT test came back 2 weeks later with the results that all chromosomes were perfect and we found out bub was a boy.
Finally we got an appointment with the hospital but unfortunately coming up to the day we were sick so I had to change it which concerned the lady cause I was coming up to 13wks so she squeezed me in I think I was about 14 weeks roughly, I thought this appointment was
like the the ones with older boys which was like an introduction appointment and so when they said it was an ultrasound it was instant panic attack, I was actually scared to look at the screen which I will forever regret that my fear took over and I didn’t get to see my little boy as much as I should have. He was laid back then the other two, cuddling his knees kind of and just felt like he took after me more… I was trying to control my breathing and I asked the lady “be honest, is there anything wrong with bub?” for which I heard those despised words “Well, I’m actually seeing more fluid in this bub then there should be.” there it was, Fetal hydrops again, this time it wasn’t in the heart but around bubs skull and lungs but his heart was reading very strong so I was hoping that was something and maybe he could pass it.
So again but this time alone, we talked about what to do I could either terminate the pregnancy because I was under 15 weeks or hold out. I thought about termination because I thought well I could just get it over and done with and move on, which just brought on a bunch of tears -I couldn’t do it, no way. I asked the lady if I could have some images of my baby and they were lovely helping me out. It wasn’t looking good as Fetal Hydrops is something that is found in IP early signs but we can’t pin it to IP because Fetal Hydrops is something that links to a lot of issues. But seeing his NIPT results were saying his chromosomes were perfect, it was leading that way.
Driving home, crying I realised I had to tell John, Me, I had to give the bad news which just made me want to hide away from my anxiety. I curled up to him (he was asleep as he works at nights and has one day at home) and said “Baby has Hydrops” and we just laid there. I told him our options and we both agreed that his heart was strong so we were going to give him a chance to pass the fluid -Fetal hydrops has 10% survival rate, sometimes there is a valve that doesn’t form properly but will eventually come into action for which happens in that 10%. So we were hoping so bloody hard.
John got a letter to say that he could come to the next ultrasound, the week leading up to the next ultrasound I felt a few little kicks which I’m so thankful I got, I did a lot of talking with him asking him to push through and please make it… unfortunately I was worried because I noticed that it was like i was leaking Amniotic fluid I know that now, but at the time I didn’t. The next ultrasound at 15weeks came around, my friend looked after Wesley while we headed to the hospital. We waited an hour before it was our turn, anxious and making jokes to help. ‘Sarah Keast’ panic attack we walked towards her and she led me into the room I absolutely freak out about, the room where we found out Oliver had passed away. Layed down and it began, I knew it wasn’t good when I saw the tummy, there wasn’t much fluid in there and he seemed a bit squished, I knew what was coming “I’m so sorry, bub has passed away” there was that numbness again and now the other stuff that is again a blur… just remember being okay not to wear my mask cause I just couldn’t stop crying. We had organised to give birth in the next 3 days so Monday, the Doctor went off to get the first tablet I had to take and we went home in silence.
I remember messaging my family, best friend and Candie a quote that was “An angel wrote in the book of life my baby’s date of birth, then whispered as she closed the book, “too beautiful for earth” My baby didn’t make it. The weekend was pretty quiet and we both just kind of soaked Wesley up – it was different this time, instead of coming home to an empty house we came home to a little boy, it really helped mute the grief of losing another child. Candie let me have the opportunity to have photos with my bump, it really helped and I had
no idea I needed that little celebration of my Bump and his life, I only got 2 photos with Oliver’s bump and I was too scared through out Wesley’s pregnancy but I have more with him, so to be able to look upon photos of my beautiful lil’ bears bump is such a blessing! It helped to celebrate him. Monday coming around we had John’s mum come to look after Wesley while we went to birth Arthur. We arrived at the hospital at 11am, settled in our room and met our team. Beautiful people -one lady was just absolutely outstanding, her name was Soraya but we called her Raya, doing my bloods with a few mishaps but you know, sharing blood to my sheets is kind right? The Anesthetist came in to tell me what drugs I could have, one was the epidural which was a HELL NO! And then there was the other one which I got to press the button, he did tell me the name but I can’t remember. I tell you after a while that button doesn’t work with the contractions and it was coming up to the point I couldn’t lay down anymore as it was just immense pain, I changed my position to my hands and knees with that asking hubby “can you put a sheet over my bum, because I don’t want that to be their first sight when the enter the room”
Raya came back in the room and she said she was so happy I was listening to my body, I then said “Oh my, yep my water just broke” and this time it was controlled and not so breathless, I was so proud of how I birthed Arthur, he was quick too unlike Oli 53 mins of active labour… Arthur was about 15 mins active labour he was born at 6:45pm. We didn’t get to hold him straight away because I was having problems with the placenta, the contractions were there but I couldn’t birth it. Because the placenta was not fully developed it had got stuck in my caesarean scar which apparently can happen – we gave it 30 mins and the doctor didn’t want to wait any longer, she tried pulling it out herself… That was very uncomfortable and I asked one of the midwives to stand at the door and let John know not to come in because I had my doctor’s hand well, you know, VERY uncomfortable and let’s be honest, birth is not dignified.
We had organised to get surgery done, this time I told them I didn’t want the general anaesthetic I had with Oliver because of how I had come too and the experience I had. So this time it was much more pleasant and I didn’t awaken like I had before, they gave me a much more gentle one. Coming back to the room I was more aware and really happy because I got to see Arthur! She brought him in a cooling cot, Arthur was a tall lad, he would have definitely out grown me by the time he was 6, reading at 14cm tall and 150g in weight, definitely took after who he was named after my Grandad who was 6ft 5 and a rake.
I am so glad that I got to have Arthur by my side all night. Every time I woke I searched for him so it helped ease my mother’s compulsion to check on my baby. I’m forever grateful for the cooling cot! I got my hugs in – Soooooooo Many hugs. And hubby and I said to him “Goodbye our beautiful boy, until we can hug each other again, we love you so much and we are going to miss you dearly”
To the babe we never got to meet, we think of you always. You will always have a home with me,
Our baby girl Isabella Grace was born sleeping 11th March 2015 I lost her in the last minutes of my labour at 40w I had a concealed placental abruption I remember laying on the bed in the hospital lots of doctors all of a sudden appeared in the room trying to bring her to life they did it for 28 minutes longest 28 minutes of my life I kept squeezing my husband’s hand tighter & tighter wondering what was going on & to be told they couldn’t bring her back to life was most devastating & heartbreaking thing I’ve even been told or felt I didn’t know what to do I just didn’t understand how it all went wrong it was a freak act of nature but I always think about her & that day. I already had an daughter who was 2years 9 months at the time Yasmine she didn’t really understand but was always asking why Isabella wouldn’t wake up. I’ve since gone onto have a rainbow baby Harrison & also another son William they are now 5 & 4 & very happy healthy boys, my husband & I got a little surprise last year when I found out I was pregnant again with baby #5 so far all is going well.
After loosing Isabella we felt so lost & confused even though we had a living daughter to look after & care for we just needed to do something so we decided to organize a ball with another couple who had lost a daughter who we met through mutual friends we organized a silent angel ball & raised $30k for red nose they have been so helpful during our grieving process & we’ve made some beautiful life long friends since being apart of red nose group. Another thing we wanted to do was help others in a way to spend more time with their baby either in hospital or at home so we raised money to donate cuddle cots we raised enough for 3 & donated them to the JHH, Maitland & Tamworth Hospital a cuddle is not a life saving device so the hospital don’t have them unless they are donated.
A cuddle cot is a cooling system that lays beneath the baby within a bassinet.
It enables families to keep their baby close and create beautiful memories, spending as much time as they wish with their baby, before saying goodbye.
My journey to motherhood starts in early 2011, when my ex and I started trying for a baby. After around 14 months of trying to conceive, I finally saw the two lines on the pregnancy test. We were elated, and the next few weeks were filled with excitement. When I was about 7 weeks pregnant, I was sitting watching TV and I felt a gush, and my pants were instantly soaked with blood. Terrified, I called my ex (who was at work at the time), and he rushed home and took me to the hospital.
At the hospital they took me in for an ultrasound, but there was just an empty sac on the screen, and I was measuring about 4 weeks along, instead of around 7, which I had based off the first day of my last period. All they could really tell me was that I would have to get some bloods done every few days for the next two weeks to check my hormone levels, and then I would come back and have another ultrasound at the end of those two weeks to see if the pregnancy had progressed.
It was a long wait, but finally the day came for me to go back for my follow up ultrasound and test results. My pregnancy hormone levels had increased dramatically, and were way ahead of what they should be, but they said there were lots of reasons for that, including multiple babies. Then came the ultrasound.
Not long after she started, the sonographer went quiet, then left the room. She came back in with someone else, who she explained was the doctor in charge. He had a look, then told me that he was sorry, but there was no baby there, and that it was something called a Molar Pregnancy. I had absolutely no idea what that was, so they sent me over to the Early Pregnancy clinic to get more information and to discuss the next steps.
As I soon found out, a Molar Pregnancy is a rare condition where the cells that develop into the placenta are abnormal. There are two types of Molar Pregnancies, complete and partial. I had a Complete Molar Pregnancy. This meant that instead of developing into a placenta, the cells had formed into fluid-filled cysts, and no foetal tissues formed. I would have to have it all removed, and there was a chance that some molar tissue would be left behind, in which case I would have to have surgery and chemotherapy.
To ensure there was no tissue left behind, they regularly test your pregnancy hormone levels, to make sure they are going down and not up. I had to get weekly blood tests for three months, then monthly blood tests for three months, then two three monthly blood tests, until I finally got the all clear. The stress from this event was the catalyst for my marriage to break up.
Fast forward to early 2014, and I had been in a relationship with Greg for over a year. Things were going amazing, and we had started to talk about having children. In February we decided that I would go off the pill, and given my history, thought it would take a while to conceive. Much to our surprise, we were SO incredibly lucky to fall the first month with no contraception. The elation was very soon dampened by severe, uncontrollable 24/7 nausea and vomiting – Hyperemesis Gravidarum (HG), aka hell on earth.
I had never been so sick in my entire life. I couldn’t eat, I couldn’t drink, and the nausea I suffered was debilitating. Anything that I tried to put in came right back out… I vomited stomach bile, I vomited blood, I had countless hospital stays where I had bags and bags of fluid pumped through me to keep my body hydrated. I spent hundred of dollars on medications that only eased the symptoms slightly.
I had immense guilt because I just wanted the pregnancy to be done, so I didn’t have to feel like that anymore. I was angry, because when I got into my second trimester, the sickness didn’t go away like all the books and movies said it would. And then it was my third trimester, and I was still sick. I hated almost every second of being pregnant.
Thankfully, when I was about 30 weeks, the HG died down and I was only vomiting once or twice a day, and the nausea eased for the most part. I had a good few weeks where I was actually able to enjoy my pregnancy, and I didn’t feel horrible. I could focus on getting things ready and being happy that Greg and I were going to have a beautiful little girl in our arms in just 6-8 weeks.
Then, the swelling started. My feet got so swollen that I couldn’t even wear shoes, and I had to go everywhere in slippers. My legs also started to get really swollen, so I took to Dr Google to see if it was normal. Everything on Google said pre-eclampsia, but I had multiple people telling me that if I had pre-eclampsia, I would be very sick, so I left it because I had an appointment with my obstetrician the following week.
I had my appointment with my obstetrician when I was 34+6 days pregnant. I told him about my swelling while he took my blood pressure, and right away he had me do a urine sample because my blood pressure was so high. When he tested my urine, he turned to me and said, ‘you’re going to have a baby today’. Dr Google was right, I had pre-eclampsia.
I instantly went in to panic mode because it was too early to be having the baby. The obstetrician got Greg on the phone, who also went in to panic mode. The obstetrician, in his calm, soothing voice, said to Greg that I would come and pick him up, we would go home, get my things, and meet him at the hospital. So that is exactly what we did.
When we got to the hospital, I was given a steroid injection to help the babies lungs. They did some blood tests to determine what was going on, so they could decide if I would be induced then or the next morning. The blood tests came back OK, so it was determined that they would give me gel to soften my cervix that evening, and that I would be induced the next morning.
Around 10pm the gel was put in, and within half an hour I was in labour. My contractions came on fast, and were very close together and very strong, but I wasn’t dilating. Then, around 1:30am, the babies heart rate would drop every time I had a contraction. They called my obstetrician, and at 2am it was decided that I would be taken for an emergency c-section.
At 2:26am, on Friday 24th October 2014, our sweet little Lacey Jayne entered this world. She was born at exactly 35 weeks and weighed a tiny 4 pound 7 ounces (2.1kg). I was given a very quick look at her, then she was rushed away with her Daddy to the Special Care nursery while I was stitched up and in recovery. We spend 13 days (it felt like forever at the time) in Special Care, and then our sweet girl was allowed to come home.
Because of the experience I had with the Hyperemesis Gravidarum, along with the trauma from having a premature baby, it took a few years for us to be ready to try for another baby. For a while there, we were both adamant that we were done, and happy with just having Lacey. But the urge for another started creeping in, and finally at the end of 2017 we both agreed that we were ready to try again. We figured that since we conceived so quickly with Lacey, that it would be easy for us again. We were wrong, and it took over a year for us to get that positive on the pregnancy test. We were over the moon.
When the Hyperemesis started again, it was back with a vengeance. I was even more sick than the first time. I spent months in bed, unable to go to work or even look after Lacey. By the time I was 18 weeks, I had found a combination of medications that helped ease it enough so that I could go back to work, keep little amounts of food down, and even feel excited about our upcoming 20-week scan.
In January 2019, the time came for the scan, and we were both so excited to see our little bubba. We had already found out we were having a girl, as I had done NIPT testing at 10 weeks, and the scan confirmed that it was definitely a little girl. The sonographer did all the measurements but stopped when she got to bubs stomach. She said that it looked like there was fluid the stomach but didn’t say anything further. We didn’t think anything of it, and both left feeling happy, like everything was perfect with our sweet girl.
A few days later, a call from my obstetrician changed our world forever. He told me that they had found something abnormal with baby, and that they suspected it was something called a tracheoesophageal fistula (TEF). He explained that it meant there was an abnormal connection between her trachea and her oesophagus.
Normally, these two tubes are completely separate, but it looked like our bub had a connection somewhere between the two, so any food/liquid that went in her mouth would likely be inhaled into her lungs, and she could drown. He also explained that this was out of his depth, and that he would have to transfer my care over to the Maternal-Fetal Medicine (MFM) team at John Hunter Hospital. I instantly took to the internet and did as much research as I could on TEF. There are several different types of TEF, and there was no way to know the type until the baby is born and in surgery. To say we were terrified would be an understatement.
A few days later, we were having a scan at the head of MFM’s private clinic, and they too confirmed that they suspected it was TEF, plus they suspected she had a bowel atresia, which is a blockage in the bowels. They couldn’t tell us much else but booked us in for an amniocentesis at the MFM clinic the next day, so they could test the baby for chromosomal abnormalities and genetic conditions. The next day we arrived at the hospital, had another scan, and then had the amniocentesis procedure. The results would take around two weeks to come back, and that wait felt like an eternity.
I still remember exactly where I was when I got the phone call to say all the results had come back all clear for all the things they tested for. I was in Melbourne with my aunt, having breakfast after an amazing time seeing the Harry Potter and the Cursed Child play. Even though it didn’t mean she was in the clear, it felt like a huge weight was lifted off my shoulders.
The next few months consisted of appointment after appointment, scan after scan, MRI after MRI. During one of our appointments, we met with the paediatric surgeon, who explained some of the scenarios our little one would face when she was born to fix her bowels. We specifically asked what the chances were that she wouldn’t survive, and he said not to let ourselves go there. We still didn’t know any details about the TEF, but we would meet with an ENT specialist after bub was a little bigger and they could see more details on the MRI images.
A few weeks after talking to the surgeon, after another MRI, I got a phone call from one of the obstetricians in the MFM clinic. She told me that the MRI had shown that our baby didn’t have TEF, and that the only thing we would be facing now were the bowel issues. We were elated, and for the first time in a long time, we felt a real sense of hope. We thought ‘the surgeon said the bowels would most likely be an easy fix. She will be born, have her surgery, and then have around six weeks in hospital to recover and then she will come home’.
When I was exactly 36 weeks, at 8:25pm, my waters broke in bed. My mum came over to stay at our house with Lacey, and off to the hospital we went. They held me off for the night as we had to have the specialist paediatric team in theatre with us when bub came out to give her instant care. It was a very long night of contractions, but luckily, I didn’t dilate much, and she stayed put until the morning.
Evie Jade Boyce entered this world via c-section at 10:53am on Tuesday 21st May 2019. When she came out, she was barely breathing and was blue/grey in colour. I remember laying there feeling helpless, unable to move or do anything, and all I could do was stare over to where they were working on her, trying to get her to breathe. Then the paediatrician looked over at me and smiled, reassuring me with his eyes that she was OK. They whisked her and Greg off to NICU while I went to recovery and rang mum to let her know Evie had arrived. Greg came to recovery to get me, and they wheeled my bed over to NICU so I could see her quickly, then took me to the ward.
While I was on the ward Evie was taken to get x-rays of her bowels so they could try and see what was going on. They injected coloured liquid into her rectum to see how far it would go, and much to their dismay it didn’t go far at all. That was not the result they wanted. They came down to talk to us and let us know that her surgery had been scheduled for the next morning, and tried to prepare us for any sort of outcome, because they didn’t know what they were going to find when they opened her up.
A few hours later, my parents brought Lacey to meet her new baby sister. I was devastated when I was told that there wasn’t anyone available to take me up to NICU, and that I would miss Lacey seeing Evie for the first time. Thankfully my mum snapped a photo of Lace peeking in the window at Evie with my dad. Later that night I was quite upset as I had only seen Evie for about five minutes, and an absolutely amazing nurse stayed back after her shift finished and took me up to NICU so I could see Evie. She sat quietly and read a book, taking time away from her family so that I could be with my baby. I will never, ever forget her kindness.
The next day was surgery day. It started with us finally being able to hold our sweet girl for the first time. It was wonderful, and we both sobbed. We sat with her before her surgery and again, were prepped on the possible outcomes. Then it was time. Greg pushed me in the wheelchair next to Evie’s bed while she was moved to the surgical unit. We got to say a quick goodbye in the corridor outside the unit, and at that point we didn’t know if it would be goodbye forever or see you later. It was one of the hardest moments of my life. Again, we had an amazing nurse who tried her best to comfort us and told us she would stay with Evie during the surgery.
The wait was agonising. We didn’t know how long it would take, what was happening, or if she would even survive. While we waited, Mum brought Lacey to see us, and we all went to the fairy garden to try and pass the time. The fairy garden was covered in ladybugs, and they were crawling all over me. To me, it felt like some kind of sign from the universe that she would make it through. Irrational though it may be, it took me a long time to not get angry at ladybugs after she died, because I felt like they had betrayed me and given me false hope.
Finally, late that night, we got a phone call to say that the surgery was done, and the surgeon wanted to meet with us. We went as fast as we could to the surgical unit and met with him. He showed us a drawing of her intestines and each place she had a bowel atresia. She had more bowel atresia’s than he had ever seen, a total of 8. He also showed us images of her intestines that he had taken during surgery so we could see exactly what they looked like. We were so relieved and thankful that she was ok.
The next few days were all about rest and recuperation after her surgery. She was on a high dose of morphine, so not much happened, and all we could do was sit with her and watch her sleep. One of those nights I got woken up in the middle of the night by a nurse saying that they needed my permission to do a blood transfusion, what was a pretty scary way to be woken up.
On the 27th of May, I finally got to hold her for the second time. She was crying and stopped straight away when she got in my arms. It was such a special moment. That same day we were visited by a geneticist, and he started asking lots and lots of questions. They were trying to find out if there was any sort of history in either of our backgrounds that could possibly explain what had caused Evie’s issues. At the time, there was nothing that we knew of, but that would soon change.
The 29th of May 2019 was the first day our lives were shattered. The immunologist came and sat with us and explained that Evie had a condition called Severe Combined Immunodeficiency (SCID). Basically, she had no immune system, and her body was incapable of creating the antibodies needed to keep her safe. They also suspected that Evie had an insanely rare genetic condition called tetratricopeptide repeat domain 7a deficiency, or TTC7a.
If Evie beat this, our lives as we knew it were over. Our house would turn in to a hospital, always having to be sterile. She wouldn’t be able to leave the house, unless going to the hospital for treatments. Nobody would be allowed to come to our home. We would have to have decontamination showers outside and Greg and Lacey would have to use them before coming in the house. I would never be able to work or leave the house again. Any sort of little bug could kill her.
Our heads just couldn’t process what we were being told, and scared doesn’t even begin to describe how we felt. We were given time to process the information and do research, and we would meet up with him again the next day to go over any questions we had. I didn’t sleep at all that night. I sat up doing research, the fear growing the more I read.
TTC7a… a condition so rare that there had been less than 100 cases reported in the world at that time. And then there was the life expectancy… 80% of infants diagnosed with TTC7a die before they are one. SCID… there is a potential treatment to help the body produce white blood cells, a bone marrow transplant, and siblings have a 50% chance of being a match. If Lacey was a match, she would have the best chance of donating the marrow for it to work. All this information was terrifying.
The next day mum and I met with the immunologist as planned. In that meeting, we noticed that he kept coming back to the subject of her bowels, and both of us walked out of the hospital and said to each other that we felt like they were preparing us for bad news. Unfortunately, we would soon find out that we were right.
Friday 31st of May 2019 started off ‘normal’ for what we had been going through – full of fear and uncertainty. We knew we would be having a family meeting with Evie’s care team, and during all this Greg was a sole trader and had a business to run. We decided that mum and I would go to the meeting, and I would call Greg and fill him in after it was done. We all thought we were just going to get an update on how Evie was going, what her next few weeks would look like as her bowels continued to heal, and how we would navigate the SCID diagnosis. Mid-morning, it was time for the meeting, and we walked down to the meeting room.
The second the door opened, and I saw where the tissue box was sitting, I knew. It had always been on the table, and now it was sitting on the arm of the couch, next to the social worker. I can’t even begin to explain the reaction my body had. I had shooting tingles through every limb. I felt hot. I felt like I was going to vomit. I couldn’t see. I couldn’t hear anything but my heart pounding in my head. Somehow, my feet knew where to go, and I ended up on the couch. Next to the tissue box. The surgeon asked where Greg was, and I told him he was at work. He said that Greg needed to hear what he was going to say, so I called and got Greg on speakerphone.
Then, he said the words that changed our lives forever. They had gotten her biopsy results back from her surgery, and her bowels were mutated. They would never function, and there was just absolutely nothing they could do, because you cannot survive without working bowels. Greg couldn’t hear what the surgeon was saying, so I had to repeat it to him. Mum flew out of the room and called my dad because Greg was alone. He was finding out his child was going to die, alone. Dad and my brother rushed over to get Greg and bring him to the hospital.
I didn’t cry that whole meeting. My whole body was in shock. The second it was over, and everyone left, I turned to my mum, and I remember her saying ‘Oh sweetheart, I’m so sorry’. She held me and rocked me while I cried and cried. She kept saying ‘I’m so sorry’. After a while I got up and went to the tearoom to get something to drink. One of the mums that we had chatted to a few times was there, and I blurted out ‘we just found out she isn’t going to make it.’ I don’t remember anything else that happened in the tearoom, I just remember going back to the meeting room to wait for Greg. A man had overheard what I said and gave mum a bar of chocolate because he was so sorry and didn’t know what else to do. That gesture meant more to mum than the man could ever know. She still has it sitting in her desk drawer in her office.
After what felt like an eternity, Greg finally got there. I just remember falling into his arms, my legs barely holding me up, and crying. We were left alone in the meeting room because we had to talk about what we were going to do. We were given two options.
Option 1 – Keep Evie alive with machines, where she would have to endure multiple invasive surgeries, have no visitors other than the two of us because of the SCID, and she would die within the first year.
Option 2 – Move her to palliative care, make her comfortable, and let her pass peacefully, surrounded by love.
To us, it wasn’t a choice. The needs of Evie and Lacey came before our own. We couldn’t keep her alive and in pain. We would surround her with love, warmth, and comfort, and let her go peacefully. We told the doctors that we wanted to meet with the palliative care doctor that afternoon so we could find out more information and arrange when she would move.
We then went to see our sweet Evie. She had been moved to a solitary room to protect her from the outside world because of the SCID. Looking at our sweet little baby, we couldn’t comprehend that she was going to die. We were going to lose her. Holding your child’s mortality in your hands is not something I would wish on anyone. It comes with such an emotional and mental burden, that will never go away. Every part of your being wants them to live, wants to protect them and keep them safe. But you can’t, and you are left in an impossible situation, because no matter what happens, your child will die. So, we protected her in the best way we knew how, by choosing to save her from pain.
We spent time with Evie, loving on her until it was time to meet with the palliative doctor. We talked in depth about our decision, about what palliative care would entail, and what would happen and when. This was a Friday, and we decided we would move her down to palliative on the following Wednesday, as heartbreakingly, they currently had a family in the palliative suite with another terminal child. Until then we would have family and some close friends meet her, and we would organise to have family photos taken, so we could cherish them forever.
The next day Lacey was finally able to hold her baby sister for the first time. To say she was excited was an understatement. She was so loving and gentle, and you could tell that Evie loved being in her sister’s arms. The moment was bittersweet for us. It was the most beautiful thing, seeing the love between the two humans you created together. But it was also heartbreaking, as we would have to tell Lacey that her baby sister would never be able to come home.
Sunday, we had our family photos in the fairy garden at the hospital. Candice, who is a friend and who also did our wedding photography, came up and took the most amazing photos. It was hard trying to smile through the pain, and to put on a brave face for Lacey, but I am so glad that we did it. The photos are amazing, so much more than we could have ever asked for, and we will cherish them forever.
On Monday the NICU social worker came to see me and talked to me about telling Lacey. She told me that we should really think about doing it sooner rather than later, because it was only going to get harder. I agreed that we would tell her that night. She gave me a beautiful, very appropriate book to read to Lacey, The Invisible String. That night, as we sat down to talk, I was absolutely petrified. I knew we were about to break her heart and tell her something her little brain just couldn’t comprehend. Something her little brain shouldn’t have to comprehend. There were lots and lots of tears from all three of us, and we all slept together that night.
Tuesday was spent with some family and close friends coming to meet Evie. I also had a meeting with my mum’s friend, the celebrant we used, to go over Evie’s funeral arrangements. It is horrible holding your child in your arms, talking about her funeral. A close friend of mine also organised to have Evie’s hand and feet castings done, one of the most special gifts we could have ever received.
Wednesday 5th of June 2019 is the day we moved to palliative care. I have absolutely no memory of the morning, or even getting to the hospital. My first memory of the day is coming to a dead stop at the front entrance of the hospital, and not being able to move. Repeatedly I said to Greg ‘I can’t do this’. He held my hand, told me we have to do it for her, and walked me in. We went up the stairs to the first floor and turned the corner to go to NICU. Again, I stopped. I broke down, and Greg had to literally hold me up. Up until this point, I had always been the stronger one in the relationship. That has since changed, and he has had to hold me up many times since Evie died.
He finally got me calmed down, walked me in to NICU, and we made the long walk to her room. The corridors seemed like they had doubled in length overnight. When we got there, we were gifted a beautiful keepsake box, which had a pillow for her coffin and a little teddy inside of it, along with a matching teddy for Lacey. We snuggled her while we waited for the doctors to come and take her needles out, which is what was giving her nutrients and the only thing keeping her alive. After that, it was time to go.
I held Evie in my arms as we walked with the palliative care team down to the children’s palliative care suite. It was a lovely room, and I am super thankful we were able to be in a less clinical setting for her last days. They even had a bed in there for Lacey, as she was going to stay with us for the first two nights, then go stay with my parents because there is just no telling how long it was going to take for Evie to pass. We were left to make ourselves comfortable, and then the palliative care social worker came and talked to us. Towards the end of the day, Evie was hooked up to the slow-release morphine machine that would keep her drugged up and comfortable.
My parents brought Lacey to the hospital for the night, and she brought with her the most heartbreaking drawing I have ever seen. The night we told her Evie was going to die was the first time she had ever seen her Daddy cry. It was evident in her drawing that it really affected her, as when she drew him, she made his tears the most prominent part of the drawing.
All we ever wanted was for Evie was to feel love from as many people in our lives as possible, so it was very important to us to have a small group of our closest friends come and meet her that night. She got passed around and cuddled. She heard laughter. She felt love. After everyone left, we gave her a shower for the first and last time. A shower with Daddy is something special he did with Lacey, and it was so important for him to have that experience. Evie absolutely loved the water and snuggling on Daddy. It was a beautiful, special moment we will always cherish. That night, Evie was hungry and in a lot of pain, and she screamed for hours until the night doctor finally got her morphine dose right. Those screams were so hard on my heart, and it is still hard for me to hear anyone say they are starving, because she literally was. She was starving and dehydrating to death.
We were trying to keep things as normal as we could for Lace, so on his way to work the next morning, Greg dropped her off at preschool. As we were walking out, there were two elderly volunteers near the entrance selling lollies. They said hello to Lacey and said how exciting it was to be taking her little baby home. That was like a stab to the heart. They looked confused when I walked back in with Evie still in my arms, so I stopped and told them what was happening. They were so kind, and they both gave me a huge hug with tears in their eyes, saying how sorry they were. Although they will never know it, their hugs meant so much to me.
My parents came to sit with me all day so that I wasn’t alone. We also had some more special visitors, coming to say hello and goodbye. But most of the day was spent with me sitting and staring at her, trying to burn every inch of her in my brain. Every line, every hair. Her little feet, her little toes. Her tiny little fingers and they way they wrapped around mine.
Around 2:45pm, she went downhill, and the palliative care doctor thought she was going to pass very soon. I called Greg and told him he had to come to the hospital right away. He picked Lacey up, and mum met them out the front of the hospital. She parked the car and brought Lacey inside while Greg ran to us. After he got there, she plateaued, and didn’t get any worse. That evening, my brother was allowed to sneak our dog, Cookie, into the hospital to meet her, which was so important to us, because our dog is our first baby. Cookie loved giving her kisses and was so gentle with her. Evie stayed the same all night, and for the second night in a row, I didn’t sleep. I was too afraid that I would wake up and she would be gone. I just lay there with her snuggled up on my chest, so if she did pass, she would leave this world the same way she entered – listening to her Mummy’s heartbeat.
The next day started with my parents coming to the hospital to pick Lacey up and take her to preschool. Greg stayed this time, because we knew it was getting close. We could hear her death rattle, and we could smell her organs shutting down. The smell of death is something that never leaves you. The palliative doctor left her stethoscope with us so we could listen to Evie’s heart, and we could hear it getting fainter and fainter. Just after lunch the doctor came back in to check on Evie. She told us that sometimes, taking people for a walk can speed up the process, but that it was completely up to us what we wanted to do.
We just wanted her to be at peace, even though we knew it meant we would have to say goodbye, so we decided to take her out to the fairy garden. She got to feel the warmth of the sun and feel the soft breeze brush her face. When we were finished, we went back to the palliative suite, and sat on the end of our bed with her laying on us. We sat like that for around an hour before I suggested that we move over to Lacey’s bed so we could put the back up and be more comfortable. We sat there cuddled together with her in our arms, our hearts shattered, telling her it was OK to let go and that we would be ok, even though we knew we wouldn’t be. I was silently begging her to let go, because I couldn’t stand watching her deteriorate any more.
At 3:45pm on Friday 7th of June 2019, Evie Jade took her last breath.
We were told to wait at least 15 minutes before we called the doctor to say she was gone, because infants can hold their breath for a long time, even though they are still alive. But we knew. She took a deep breath in, exhaled, and then silence. No more rattling. We both looked at each other and at the same time said, ‘that was it’. So we called the doctor. While waiting, we both took turns cuddling and kissing Evie, saying our goodbye’s, and taking our last photos with her. I remember lifting her up to give her a kiss, and bright green bile dropped out of her nose and got all over my shirt and her blanket. I can still smell it in my head.
The doctor arrived, and she checked Evie’s heart. She nodded and said she was gone and comforted us the best she could. I rang mum, and with horrible timing told her Evie was gone. She was picking Lacey up from preschool at that exact moment. She told me she would go get my dad and bother, and then they would come and say their goodbyes. Before she died, they had asked us if they could take some blood and do an autopsy for medical research into her condition. We said yes to the blood, but no to the autopsy, as her little body had already been through so much and we just wanted her to be in peace. They did the blood draw and then gave her back to us.
Then, my parents, brother, and Lacey arrived. We thought it was very important for us to show Lace that Evie’s death wasn’t scary, so that she didn’t have any worries or fears about death. We all spent some time with Evie, and when we were done, we walked her down to the morgue. They had a beautiful white bassinet set up for her, and we sat on the lounges, said our final goodbyes, and placed her in the bassinet. Walking out of that room and leaving her there took every once of strength my body had left. As a mother with a newborn, your body is biologically programmed to feed and protect your baby. You can’t just flick a switch and your body suddenly knows the baby is gone. I was still recovering from a c-section, and I still had milk leaking out of my breasts. In that way, mother nature is cruel.
The time between Evie’s death and her funeral was spent planning her service and making her order of service booklets. I needed something to do to keep my mind busy, so I spent hours designing them and trying to make them look as perfect as her. It was something that gave me a purpose, even just for a while. I really have no memories other than making the booklets during that time.
Two days before Evie’s funeral, we had her viewing. It was just the two of us. They had her in her dress we gave them, and she was snuggled up in the knitted blanket Lacey used when she was born. Together, we gently put her in her little casket, and put some of our most treasured possession in, so that she had something special from all of us. The biggest one for me was my beloved teddy bear. I had him since I was a little girl, and still slept with him under my head at the time. I wanted him to go with her so that she wasn’t going alone.
On Saturday 15th of June 2019, we had her funeral. We wanted to use our old mini panel van to place her casket in when we got to the memorial park, so I took all the flowers we had been sent and spread them out in the back of the mini. When we got there, we placed Evie’s casket in the back, and it was surrounded by beautiful flowers. We were absolutely blown away by the turnout, with almost 200 people coming to show their support. To this day, whenever I think about it, I am still so humbled that she meant so much to so many people. After her service finished, we released 17 balloons to represent her 17 days of life.
The next few months are a complete blur. I was on maternity leave and Lace had preschool and daycare, so my days were pretty much spent laying on the couch watching true crime documentaries. I had always been obsessed with them, and always felt for the parents who had lost their children, but now it was different. Now I could understand their pain and grief, and I felt a connection to them. After a few months I made the decision to go back to work, because I needed a reason to get up and do things. To start living my life again.
During this time we also had to get our DNA tested so they could compare it with Evie’s and find out more about what happened. We got Evie’s results and it was the genetic condition they had suspected. Greg and I each had a different mutation on the TTC7a gene. We were fine because we only had one mutation in the pair, but because Evie had inherited my mutation and Greg’s mutation, it was terminal. We were told that every child we had would have a 1 in 4 chance of having the same fate.
Neither Greg nor I could turn off the want for another child. A few months after Evie died, we made the decision that we would try again. We had 2 or 3 months of negative tests, then in the middle of December 2019 I took an ovulation test. It came back with the smiley face, so I knew I was ovulating. Something in me just felt like this was it, it was going to work. A few days later, one of our friends passed away in a car accident. We were absolutely devastated, and because of that I didn’t really think about pregnancy for a couple of weeks. We had his funeral in early January 2020, and a few days after that I realised that my period was a day late. I went and got a test, took it, and it came back positive. We were both so happy, but mostly, we were terrified. We knew that we had a 1 in 4 chance of this baby dying too.
I had read somewhere that there had been some studies done on hyperemesis gravidarum, and they had found that if you have a history of it and you start medication before the symptoms start, it can help to reduce the severity of it. So I started the medication cocktail that I had found helped towards the end of the second trimester with Evie’s pregnancy. Low and behold, the research seemed accurate. I was still very sick, but I wasn’t confined to my bed for 3 months straight.
Because of my history, I had to go through Maternal-Fetal Medicine again. They booked me in for an appointment around the 12-week mark, and I was told that they would do a CVS to get babies DNA and test for TTC7a, and then we would have a two week wait for the results. During my appointment, they got me all prepped for the CVS, but when they did the ultrasound, they found that they didn’t have safe access to my placenta. We would have to come back in two weeks so they could try again. Two weeks later we were back, and the same thing happened again. No safe access to the placenta, come back in another two weeks and this time you will be far enough along for us to do an amniocentesis. We went back again two weeks later, had the amnio, and the long wait for results started.
A week and a half later I got a call from our genetic counsellor, and she told me that they had all the generic results back, which were all clear. They had done one lot of testing for TTC7a but were doing another just to make sure their results were correct. She also asked if we wanted to know the sex of the baby, and we said yes. We were having another beautiful little girl. A few days later she sent me an email around 8pm saying that she had the TTC7a results back and asked if it was too late to call. I wrote back straight away, and she called me. I was so scared. She told us that our little lady only had Greg’s mutation, and she didn’t have the terminal TTC7a mutation. We were both overcome with emotion.
Because of the results, my pregnancy was now classed as normal, and I was able to move my care back to my private obstetrician. He took amazing care of me, and made sure that I had regular, very detailed scans to make sure everything was going smoothly. I was lucky enough to have the same sonographer that had found Evie’s issues on her 20-week scan, and from then on I would only book my scan appointments with her. Towards the end of my pregnancy I started to get high blood pressure again and had proteins in my urine indicating the onset of pre-eclampsia. Just as with Lacey, I was admitted to hospital at 35 weeks, this time for bed rest until my c-section. I was admitted on a Monday and given steroids for baby’s lungs. On the Wednesday, I had another scan. It showed that my amniotic fluid was decreasing, and that baby hadn’t grown much, so they made the decision to book me in for a c-section on Friday morning. I had a little chuckle to myself as Friday was the 21st of the month, and Evie was also born on the 21st of the month.
On Friday 21st of August 2020, miss Ella Rose was born 4 weeks early. She was teeny tiny, even smaller than Lacey, and she was incredible. She was feisty and strong and didn’t need any assistance other than some light therapy for a slight case of jaundice. She did so well that we were discharged on the Monday. It was all very emotional and surreal… we were bringing our baby home. Ella will be two in August, and she is still feisty and strong. She has brought our family so much joy, and it is incredible watching the love between her and Lacey.
In a few weeks it will be three years since Evie was born, then 17 days later three years since she died. The grief and the memories are still so saw raw, and we take each day as it comes, sometimes even minute by minute. Even though we have to live every day with the greatest pain any parent could ever have, I am so thankful for her. I am thankful for her love, I am thankful for her life, and I am thankful for the lessons she has taught me. Evie Jade, you are forever in our hearts.
To all the nurses, doctors and social workers who looked after us in MFM, delivery, NICU, palliative care, and the maternity ward. You went above and beyond to not only make sure Evie was looked after, but to make sure our family was looked after too. You all have a very special place in our hearts.
To Dr Kahn Preece, the paediatric Immunologist at John Hunter Hospital, who showed nothing but kindness and compassion from the time he became involved in Evie’s care, to two years later when little Ella was in PICU. Even then, you didn’t hesitate to come and see me when I requested to talk to you, just to put my mind at ease. You were there the whole time to answer any questions we had, and you supported us through our own genetic testing journey as well. We will never forget you (or your amazing hair!).
To Dr Raj Kumar, the paediatric surgeon at John Hunter Hospital who tried everything in his power to save our little girls life. Who still took the time to explain everything to us late at night after performing an 8-hour surgery on Evie’s tiny little bowels. We know how hard you tried, and we know how much it hurt you that you couldn’t save her. I could see the pain in your eyes when you told me she wouldn’t survive. From the bottom of our hearts, thank you for doing everything you could.
To Dr Sharon Ryan, head of the paediatric palliative care team at John Hunter Hospital. Even writing this now, almost three years later, I am lost for words to accurately explain just how much you mean to us. You were everything we needed in a doctor during the worst experience of our lives. You not only made sure Evie wasn’t in pain, you made sure you were there for whatever Greg, Lacey and I needed as well. You cared for all of us. You even took time out of your own personal life to come to Evie’s funeral and show us even more support. Thank you for absolutely everything.
To my Angel Mum bestie Mel, I am so grateful to have met you, even though it has only virtual so far. We came into each other’s lives at just the right time, when we were both searching for someone who was going through what we were, so we could feel just that little bit less alone. We have grieved together for the past (almost) three years, we have told each other our deepest thoughts and fears, and we have gone through our pregnancies after our losses together. You, Jazzy, Axle, and the rest of your family mean so much to me.
To Candice, thank you for doing this project. For giving us a voice and bringing recognition to a topic that is so often ignored. Infertility and baby loss should not be taboo, it should be talked about just like we talk about other losses. Our baby’s matter, and you have given us a platform to tell our stories and get the conversations started. Through you, Clyde, and all our babies, will always live on.
To my Mum, Alison, for taking me to most of my MFM appointments so I didn’t have to go alone because Greg had a business to run. For driving me to the hospital after my c-section every single day, so I could be with Evie. For holding me up after we were told Evie wasn’t going to make it. And for being one of my biggest supports, every single day since.
And lastly, to Greg, Lacey, Evie, and Ella. Thank you for being my strength. You are why I get out of bed every morning, why I laugh, why I have beauty in my life, and why I love.
It’s definitely hard to put into words what I’ll be talking about, let alone how to start it off. So I’ll start at the beginning of where everything began to turn a bit crazy for my infertility.
I was 14 and had been having some super crazy periods for almost 2 years. The constant pains or heavy bleeds that no one seemed to take notice of when I’d talk to drs. Until I met the Dr that diagnosed me with PCOS (Polycystic ovarian syndrome), being 14 and already having to deal with something like that is quite overwhelming. Going through my teens whilst having really painful times each month and also in between was a horrible experience. Especially when cysts would rupture. The older I became the more irregular my periods became. I was 19 the first time I was told I’d have trouble having children. Another dr told me I may never have children. At 20 years old I fell pregnant with my beautiful little miracle Bella, I was so excited, anxious and terrified about seeing that second little pink line pop up. Excited because it’s everything I had ever wanted, to become a mum. But terrified because I knew it wasn’t going to be an easy pregnancy. And boy was I right. At around 6 weeks I started getting the itchiest hands and feet ( I thought it was just part of pregnancy) At 7 weeks I started bleeding and having the worst pains, ended up in hospital where they thought I was having an ectopic pregnancy, They done a ultrasound and I had a very healthy little girl in there but the dr was concerned because he couldn’t find where the bleed was coming from. I was in for a few days for observation and then sent home with no further development other then the “it’s common to have bleeds early on and through pregnancy”. 13 weeks came by the itching had gotten worse so I brought some calamine lotion which took the edge off but I also started bleeding again and had started getting horrific morning (every time of day) sickness to the point I was spewing blood. Another hospital trip with no answers. 16 weeks rolled around and I was having the worst pains I ended up back in on monitoring where they said my liver functions were abnormal. They took more bloods a few days later and my liver function levels were crazy high. But couldn’t figure out why. At this stage I had the worst acid reflux/indigestion which never helped. At 24 weeks I was at my sisters house and started having fluid coming out, an ambulance was called and I had this gosh almighty urge to push. We thought I was going to give birth in my sisters living room at one point. We made it to the hospital where they gave me a steroids shot, they prepared me for the fact my baby was wanting to make her way but My cervix hadn’t dilated, so again ended up in for a few days for observation and another lot of steroids. It wasn’t until this hospital trip that we figured out I actually had a rare liver condition that’s only brought on from pregnancy called Obstetric Cholestasis and the only reason they knew what it was, was because I told them how itchy my hands and feet were. Obstetric cholestasis is where the liver is impacted by pregnancy and there’s a build up of bile acids in your body.
Now that we finally knew the situation we could start managing it, however because of this condition I had to be closely monitored and induced by 38 weeks as there is a higher risk of still birth. Bleed after bleed kept happening and they couldn’t figure out why or where they were coming from. It came around to the induction date 16/1/2016 they started with the stretch and sweep which done nothing so they tried another one a few hours later. That didn’t work so the morning of the 17th they put the balloon in. Now this was an experience. The labour finally started but was dilating quick enough. That night I started bleeding very heavily to which I was monitored closely again. That morning 18th January 2016, they took the balloon out, broke my waters and hooked me up to the hormone drip. We were at the final stage of induction . The pain was horrific and I ended up getting the epidural. At 4:40pm my beautiful little miracle Bella was born. My absolute pride and joy was finally in my arms after such a whirlwind pregnancy. We were finally together. Bella and I were settling in beautifully to our new journey in life together, then a week after I had given birth I was in excruciating pain again, and started passing massive tissue clots. Being a new mum id never experienced this before and thought it was a normal after birth experience but 2 weeks later it was getting worse so My mum took me to see a gynaecologist, they examined me and had a scan done and reckon I had part of my placenta still inside me. I had to go for my first laparoscopic surgery just 1 month after becoming a mum so it was super overwhelming. My surgery day was here and my gosh I was nervous, I didn’t come out of anaesthetic very well so was in recovery a tad longer then usual. My gynaecologist told me she found I had “quite aggressive endometriosis” she recommended I get the Mirena as it can help with endometriosis and the bleeds it causes. I agreed and had it done. A week later I was in excruciating pain again and ended up in hospital. My body was rejecting the mirena and caused an infection and because of just having surgery the infection was in my incision sites. At this point I became quite depressed thinking that I just couldn’t catch a break. (Little did I know just how much more of an emotional roller coaster the next few years were going to be).
I ended up getting a second opinion and this gynaecologist was amazing, so thorough and really helped me understand what endometriosis is and what can help through flare ups etc, but he sent me for another scan and the first gynaecologist had missed quite a bit so he took me back in, I had a bleed and a mass in my uterus, which needed to be biopsied plus a multiple cysts on my ovaries, so he took me back in and things finally started to look up. I was finally able to start enjoying being a mum.
Fast forward to the 17th November 2017. Bella’s father and I experienced a miscarriage. It was called a “chemical miscarriage”. I don’t think I ever fully recovered from that. But moved forward for my girl. In April 2018 Bella’s father and I got married but sadly things didn’t work out for us and we separated just 4 months later. I’m a firm believer in that things happen for a reason, because when I was least expecting it just 2 months after we separated I met the most amazing man, he took on Bella as if she were his own and has made the most beautiful bond and relationship with her. We started living together and in the February of 2019 I was going on a cruise with a friend of mine, I never had regular periods since I was 14 but realised it hadn’t made an appearance for a little while so a week before my cruise I took a test and couldn’t believe it when I seen those 2 little lines. We were at Evan’s sisters house when I took it and so we made the joke of putting a bun in the oven and getting him to look inside. We were all laughing and so excited. Everything so far was going so well. We found out I was due on my parents wedding anniversary which was so special. At 11.5 weeks our little baby who’s heartbeat we had just heard it’s heartbeat and seen so actively moving at a scan at 11 weeks had become our tiny little Angel instead. We chose to have testing done to find a cause which they couldn’t and ruled it as a natural miscarriage, but we found out our little Angel had down syndrome and was a girl. We named her Amarlia Kate. Our sweet little Angel is thought of all the time. I didn’t realise just how much emotional pain someone could go through until I went through this. I started passing some really discoloured tissue type clots but I had also not been this far along in my previous miscarriage so thought it was the normal process until I became incredibly ill to the point I was constant spewing and having seizures. Evan called my sister over and she called the ambulance we got to the hospital which was very unhelpful and just told me I was dehydrated, so we went and seen my gynaecologist and he sent me straight to Newcastle private to meet me there saying I was going into sepsis shock. I had to be on a 4 line antibiotic drip for 12 hrs before he could operate as there were a few risks. An already heart breaking experience was becoming even harder. When he operated he told me my left ovary was covered in endometriosis fixated to my bowel. Which needed to be another surgery as I wasn’t aware of the damage and he had to talk to me about risks, losing the ovary, part of my bowel which could lead to a colostomy bag among a few others. So once we knew what was going on we went back in a few weeks later. Thankfully he was able to remove the endometriosis and defuse my ovary from my bowel with very minimal damage to my bowel. This surgery though took a bit longer to recover from then my usual laparoscopic surgeries. In April 2021 I was diagnosed with Adenomyosis, and now both ovaries are fixated to my bowel which will require another surgery soon. We’ve been told because of the damage from the surgeries, the pcos, the endometriosis and now Adenomyosis it really wouldn’t be beneficial going down the ivf road. I’ve asked about getting my eggs extracted which isn’t on the cards either due to having multiple cysts and scar tissue inside and outside of my ovaries there would be substantial risk of my ovaries rupturing. Myself and Evan have gone through 7 more miscarriages since our first and each and every one gets harder. All up I’ve had 12 laparoscopic surgeries and can definitely feel the effects of them daily. Anyone else going through any of these women health issues I want them to know you’re not alone.
In 2021 we finally got those two lines after months of trying since having our beautiful boy Archer. We were so over the moon to be adding another addition to the family, we waited until after our 8 week scan to tell our immediate family, which was so much harder to Keep a secret the second time around, but once we told our family everyone was filled with so much joy. The weeks flew past and the next thing we knew I was at our 12 week scan. I went in excited, finally being able to see the little growing baby inside. The scan started of well, there was a heartbeat, the baby was moving and twirling. But once we went more in depth with measurements the room went silent, the sonographer was going over the same measurements multiple times and taking more and more photos, a scan that was suppose to be 30minutes turned into an hour. He then said those dreaded words ‘ I’m just leaving the room and going to let the doctor go over these photos and measurements ‘ my heart sank, I instantly knew something was wrong. He left the room for what felt like hours, once he returned he handed me the paper to wipe the gel and pulled down his mask and said ‘ I’m just going to me truthful to you, I really want you to get this scan looked at by a doctor as soon as possible ‘
I had no words, and said ‘ I don’t know what to say ‘ got up, went to the bathroom and immediately broke down. I walked out of the scan, heartbroken, unable to compose myself, couldn’t talk on the phone to my husband & couldn’t drive home. I sat in the car park for an hour trying to process what I have just been told. Every thought running through my mind, what is going to happen next?
The next day my OB called and immediately told me to have the Harmony genetic testing blood test done. And explained the measurements of the baby’s neck skin and nose is very high and shows possible chromosomal disorders, the baby’s legs have not formed properly & the baby’s kidney is very enlarged, my head was full of a million thoughts but I still had some optimism that everything is going to be okay, the baby had a strong heart beat. I thought ‘ sometimes these scans can be incorrect Right? ‘
A week passed, I called the blood test company every single day awaiting for those results. In the meantime I was referred to the maternal fetal medicine unit for a possible amniocentesis but I had to wait until I was 14+ weeks before they would see me. The longest 2 week wait, over those 2 weeks the results came back from the harmony test. Trisomy 13, my world fell into a million pieces, what are we going to do? I can’t terminate the baby, it’s our baby. But how will life be if the baby survives past birth? Will we have a long recovery period once the baby is born? Will our 2 year old Archer suffer from this?
A million thoughts constantly running through my mind.
We then finally got our appointment which I had to attend alone due to covid, I went into the scan. Nervous, nauseated, sweaty.
The scan started, the baby had grown since our last scan. I held onto that slim glimmer of hope, but seconds later she said ‘ how far along are you? ‘ my heart sank, I couldn’t answer that question. The only words that came from my mouth was ‘ just say it please ‘ and she said those dreaded words ‘ I’m so sorry, The baby has no heart beat ‘
Deep down, I knew this already. How can a baby with so many abnormality’s survive for so long? My morning sickness has stopped.
The sonographer then said ‘ I just need to take a couple more photos is that okay? ‘
I just nodded and asked to turn the screen off so I can’t watch whilst a stream of tears rolled down my face. The scan was over, I was walked into a empty room by myself to find out what is to happen next. I was Given the option to deliver the baby myself at home or in hospital or to have a D & C procedure done, i opted for the D & C. My heart couldn’t bare the thought of going through anymore pain.
The next day I was booked in for a D&C at 6am. I arrived at the hospital, by myself, alone in a room sobbing, tears rolling down my face from the moment I was admitted right up until the moment I was given the gas to put me to sleep. The most traumatic experience was being alone through this whole process, from the moment I stepped into the hospital to the moment I walked out hours later after surgery. My husband couldn’t be there due to the covid rules and it was the hardest thing I have ever endured.
I couldn’t wait to get home and hug my little Archer, on the way home it was raining. I looked into the sky and there was a beautiful, bright DOUBLE rainbow.
I knew everything was going to be okay, one day our rainbow baby will come and join our family. We are still waiting for that day to arrive but Not a day goes by where we don’t think about who you could have been, what you would have looked like, your personality & how you may have impacted the world, our world. We will always love you, will always think about you.
Edmund Joseph Quinn, aka ‘Teddy’, was born in a hurry at 26 weeks gestation.
Against the odds little Ted’s tiny 820gram frame survived birth. He spent the entire 40 days of his life in NICU at John Hunter Hospital.
Teddy had a very rare and unfortunate defect in his left bronchiole which prevented his left lung from inflating and exchanging much need gases to support life. He endured multiple infections and other events during his short time in NICU, but it was Teddy’s little left lung that ultimately sealed his fate.
Little Ted was loved on by his family every day in NICU, and the nurses and specialists all became a huge part of Teddy’s daily life. He put the nurses through their paces, keeping them on their toes and had a boisterous personality who wasn’t shy in letting everyone know when he was displeased with having his nappy changed.
Many people were touched by little Ted’s courageous fight to stay with us earth-side; he taught us all the greatest depths of love, strength and resilience that we will carry forward with us forever.
We will always say Teddy’s name out loud, share his story of his short but significant life and remember him with the greatest of love and pride.
Cheers to Little Ted, the beautiful boy that made us parents and a family
9/9/2021… Hubby (Ben) and I were making plans for the next year; I had not long stopped breastfeeding our last bub and started drinking again, BBQS and events were coming up by the truckload, I was studying full time plus student placement and I got my motorbike license! I wasn’t overdue, but I was due that day and I had left over pregnancy tests from our first Rainbow babe Cobus, so I decided to pee on a stick before I opened my bottle of wine for the night… And oh look baby, BABY! I’m not going to lie, I had mixed feelings… I wasn’t sure that I was ready for another baby, with all these things in motion and Cobes only being so young (we were going to REALLY try again in another year when he was 2.5/3ish), but there we were with two pink lines again! With our 3 beautiful boys Memphis – 8.5yrs to a previous relationship. Ben and I have been together since he was 3. Matthew – 5yrs, our nephew/foster child (Insert Early pregnancy loss 6weeks) Then our Cobes… who we were told was a girl at 21weeks and came out a very healthy happy, well endowed BOY (seriously, I don’t know how they missed it) So we wanted and early gender determination this time so that I could mentally prepare myself to be a mum of 4 boys! I wasn’t risking another scan mishap so at 12 weeks I had a blood tests sent to LA, and our results showed us a BABY GIRL! What seemed like “poor timing” brought us a beautiful baby girl to complete our family. Every blood test we did was perfect, all routine scans were prefect… we were mid pandemic, and I was hesitant in getting the vaccine… I refused to get it in the first 12weeks and held off as long as I could until my school placement told me I couldn’t work anymore without the jab. So off I went! Very nervously I got my 1st jab, perfectly fine! Fast forward a few weeks 7th Dec and I got my 2nd… I felt off, but no sickness or strange symptoms; normal reaction right? But went home and checked with the Doppler anyway, Strong heartbeat!! PHEW! Fast forward again to 11th Dec… I heard the heartbreaking news that my beautiful cousin and husband had lost their baby boy, Clyde I cried for hours, hand on my bump, unable to fathom the hurt. I raced home and checked on my baby with that Doppler… but I couldn’t find her… I told myself I was panicking. I told myself everything was fine. Continued about my days until Monday when I check again… nothing… And the next day, nothing. Until finally on Wednesday, I called my GP and asked for the nurse to check me over. She couldn’t find her, so off we went for an ultrasound. A big part of me already knew what I was walking into, but still nothing could ever have prepared me for this moment… When the sonographer held my hand, looked at me and simply said, “I’m so sorry”. On Thursday my husband and I went to the hospital where they explained our options and we met with a social worker… honestly at that point I was holding it together pretty well… a part of my was okay with the fact that she was still safe inside me. I had my moments but for the most part I let the doctors do all the tests they needed to do (which was like a gazillion blood tests, 2 ultrasounds and an amniocentesis) and I slept while my poor Ben tried to curl up on the horrible 1980’s sofa bed next to me. They gave me the initial pill to induce labour but said there was only a 10% chance it would work but we could stay or go home but they wouldn’t give me the second intervention for 48hours. So we decided Friday morning to go home and be with our boys while we waited. On saturday we took Nanny (my mum) and our boys up the beach and I took my baby girl for one last swim in the ocean. That night I put the little two off to bed and curled up with my eldest. He really felt this with us, he was so excited to have a baby sister! We have always been very open with him about our babies, he tracks their growth on the app with me and likes to know what new part of them is developing and when! The news devastated him hugely. We cuddled, he cried, I cried and we went to sleep. Somewhere around 2am I woke to the dreaded back-pain! Always the first labour sign for me. My labour with Cobus was a very quick and successful VBAC after an emergency c-section with Memphis. We always joked from the beginning of pregnancy that we would have to rush to the hospital with this one because she was going “fall out” of me! (We we’re right!) After 15mins the cramping was strong. I woke Ben calmly; called the birth unit 5 times with no successful answer… Shit was getting real QUICK so we called in nanny to watch over the boys while we raced to the hospital. We left home just after 3, the hospital is an hour away (when going the speed limit)… turns out we didn’t have that long. 45mins in and just 5minutes around the corner from the hospital I told Ben to pull over. This baby was coming now and he was going to catch her! This was literally how I always imagined her birth would be! Crazy fast and most likely on the side of the road… One big breath, Dads hands and a snap-on t-shirt and she was delivered, still completely encased in her amniotic sac. We bundled her up and carried her on to the hospital. When we got there. Our amazing midwife took our baby away to break her waters and bringing her back to us in the cold crib. She spoke to her as she would any other baby. Dressed her in a little gown and beanie, wrapped up in a blanket. We stared at our baby and we held our baby, just like we would any other of our children. Bens parents came to see the baby, just like they would any other grandchild. And then eventually… we left the hospital with empty arms. Devina Kay Van Der Linden, her name literally means “the divine one”. And she is. Always and forever
We loss our first bub at 12 weeks in 2017 miscarriage 2018 we fell pregnant with Isaac in the August 12 weeks scan was a scare so we got into the John hunter for scans at 14 weeks following high risk trimester screening Then they couldn’t get us back to them till 16weeks then they found that he only had one kidney and one lunge and he only had 2 vessels umbilical cord. Then I body was getting so sick it was starting to stop as my bladder stop working it was so we did see the John from our 16week scan till 24weeks as no one called us to say that things we worse then what they said Then at our 24week scan Isaac had passed away and the next day I had to go into labor for 15 painful hours it’s just so traumatized I really can’t explain the situation as it was just so hard he’s in a very safe place in heaven now.
Our pregnancy with Gracie was completely normal until our 12 week scan/blood tests, the results showed she was high risk for Down Syndrome. It was the week from hell waiting for results from further testing. When we finally got these back we were told everything came back low risk and that she was a little girl- we already had a 1.5 year old boy, Xavier, so was so happy to be getting one of each. We were so excited and went on thinking everything was fine for the next 7 weeks. Then when we got results from our 20 week scan, all of that excitement went out the window and we were back to dread and worry. Gracie’s scan showed multiple issues, stomach not visible (she couldn’t swallow amniotic fluid), large abdomen and liver, fluid on the forehead and back of the neck and low set ears. We were referred to the mfm unit at John Hunter for more testing, the next few weeks were torture waiting for results and having weekly appointments. Because Gracie wasn’t swallowing fluid, I had excess (polyhydramnios) and I felt full term uncomfortable, this resulted in me having to have 2L of fluid drained. Every set of results that came back were clear, they were stumped that there was no explanation yet but they were sure it was going to be some kind of chromosome/genetic condition causing the problems. We were preparing ourselves for a child with some kind of disability, her heart and brain were perfect so we were not expecting when we finally got a diagnosis 3.5 weeks later to be told we would not be taking our baby home. Gracie had the most lethal variant of a very rare genetic condition called Costello Syndrome. There is only 300 known cases in the world and only 11 were the same lethal type as us, there are people living with it out there but in our case Gracie would pass away either before birth or shortly after. Because of my health with the polyhydramnios (the fluid had gone straight back up within 6 days), our specialists basically said there was no choice. To have the safest outcome for myself and future pregnancies, I was to terminate our baby and avoid delaying the inevitable. We had 5 hard but beautiful days with her still kicking around in my tummy, before we went into hospital on 9th August 2021 (I was 26 weeks pregnant) to start the process. Because of the excess fluid being dangerous for birth, I had to have another drainage at the same time the termination was completed. I think this part was harder than the birth itself, I remember sobbing squeezing Phillip’s and the Midwifes hands when they told me she was gone. I stayed in hospital on my own overnight and the next day was induced. We met our baby girl, Gracie Rose Petronio on 10th August 2021 at 8:42pm. She weighed 1335g and had similarities to her big brother. We talk about Gracie all the time with Xavier, he is getting another baby sister in August this year so it has been important to us to help him understand that he has two little sisters, one on the moon and one coming home with us. This pregnancy has been a dream, exactly like Xavier’s no complications and no signs of anything wrong. I know Gracie is up there helping her little sister come home safely in our arms and we are forever grateful to her and the time we had with her. We love and miss her every day.
My husband Josh, and I began trying for a child shortly after we married in September 2016.
Surprisingly, we fell quickly in January 2017 with “Little Nugget”.
The pregnancy was smooth, and I had no symptoms at all.
But at 7 weeks gestation, I began to bleed heavily while at work.
This was quickly followed by painful cramping.
I went to the emergency department where it was confirmed that I was miscarrying our little baby.
From there, it took 18 months, a diagnosis of “unexplained infertility”, multiple surgeries, scans and tests before we were blessed with our rainbow baby, Maia.
My pregnancy with Maia wasn’t easy, and I was sick for the 37 weeks before I was induced for preeclampsia.
When Maia was a year old, we began trying for our second baby.
This journey was even more complicated.
No regular oral fertility drugs worked.
It took changing specialists to get a diagnosis of Polycystic Ovarian Syndrome (PCOS), before we were told to conceive another child, we’d need to undergo IVF.
Between Covid, the passing away of Josh’s father, cancelled cycles and Ovarian Hyperstimulaton, we concluded our IVF with 8 frozen embryos.
On the same day as our photoshoot, I found out that our frozen embryo transfer, Embryo 14 successfully implanted and I am currently 4 weeks pregnant.
I like to believe that Little Nugget sent us Maia, and Embryo 14.
I still think of them regularly, and wonder what they would look like.
But now I know that Maia and her future brother or sister will always have a little angel watching over them, guiding them and protecting them.
At 5.10pm on the 6th of May, 2020, my Grace entered the world at 17 weeks and 5 days gestation.
Grace was our second pregnancy, having lost an early pregnancy before her too. She was so longed for and so loved.
Everything looked perfect in our dating scans, blood results and I felt really good! But nothing prepared us for what would come next.
I was very oblivious going into our 12 week scan. The sonographer didn’t show any signs that anything was wrong, I was in awe of what I was seeing. A successful pregnancy, a teeny tiny baby moving around on the screen that was mine!
We got to go for a walk while the doctors reviewed the images and gave us the report. We sat down and the first words to come out of the doctor’s mouth were “I am worried about your baby”.
I think I stopped breathing. Not again. I sat blankly and listened to her.
“Baby’s heart is on the wrong side of the body, the stomach is in the wrong place. It looks like there’s a diaphragmatic hernia meaning the lower organs have travelled up to the space where the lungs should grow”. She went into some more medical terms and I nodded along. When she left the room, I turned to my husband and said “why does this keep happening? I can’t lose another one.”
But I did.
We were given a 50% chance of survival at birth, countless surgeries required and lifelong torment. And that’s only if the lungs actually have room to develop to at least 30% capacity.
We deliberated for weeks over what to do. I didn’t want to lose our girl. I didn’t want her to live a life of pain and lose her soon after birth. We lived 2hrs from the closest decent help in a hospital.
The decision we made together continues to haunt me. Did I make the right one? Was there anything else I could’ve done? What would she be like now? But I can’t change any of that now. And I have to live with it.
My Grace showed me strength, courage, heartache, resilience and most of all: love.
After Grace, it took me 3 months to fall pregnant again. And I lost that pregnancy within 2 days of a positive pregnancy test. Absolutely defeated.
After that, it took another 5 months to fall pregnant again with help from our GP tracking my cycles, and blood work every month.
It was a very, very anxious pregnancy and I feel like I couldn’t enjoy a moment of it because it could be ripped away from me at any moment.
We passed the 12 week scan with flying colours. But I was nauseatingly nervous and uncontrollably crying in the week leading up to it. We passed the 17 weeks and 5 days that we lost Grace. I cried. We passed 20 weeks. I cried. Every kick and every movement I felt I was in love and every time it stopped I would live in fear.
Our rainbow baby, Penelope Grace was born in November 2021. She doesn’t understand the role she plays in our lives, how absolutely cherished she is, how I would move mountains for her. And how lucky we are to have our guardian angel looking over us as we live a journey of grief inside one of happiness.
On the 16th August 2021, our world changed forever. Alex was out and I was playing Fallout 76 on my Playstation with my friend Stef. I was having a big old whinge to Stef about how sore my boobs were and “stupid PMS”. “You don’t think you’re pregnant do you girl?” she says, and I suddenly started to wonder when my last period was. I jumped off my game and went and took a test. It very quickly came back as positive! I burst into tears. I was so happy and so shocked and so terrified. I had come to the conclusion after so long, that Alex and I would never be parents, but here, in my hand was something I never thought I would see, a positive pregnancy test! When Alex arrived home, I tried to hide the fact I’d been crying and asked him to sit on the lounge as I had a surprise for him. He closed his eyes and held out his hands and I put the test in his hands. He opened his eyes and stared at the test for what felt like forever. “You’re going to be a daddy!” I will never forget the look of pure love and excitement in Alex’s eyes as he leapt of the lounge and hugged me. We were finally going to be parents!
A few days later I headed off to my GP to get the test confirmed and see what was next. My GP wanted me to go with the private system so I have ongoing care due to my PCOS etc, so I opted to go with Dr Nashim and her private team, but birth within the public system. We met up with Azra and got to know her and knew we were in the safest hands for my pregnancy. It still didn’t feel real! The whole first trimester was during lockdown, which I was kind of glad for. I was so tired and my morning sickness (that was more like evening sickness) would’ve made me doing photoshoots very difficult. By week 12, my beautiful little bump was starting to show and I started doing a weekly photoshoot of myself in my large collection of gowns so I could have a nice timeline of my pregnancy at the end. We decided we would hold off on announcing as I wanted to do something “extra” for our announcement and we wanted to make sure everything was safe and we’d told our closest first. As we were in lockdown and couldn’t see our families to tell them in person, we decided we wanted to do something special to tell our parents. We ordered bottles of wine from our favourite vineyard Ivanhoe and had the custom labels I’d designed put on them. We posted them off interstate to our parents with strict instructions they were not to open the box. Our 10th wedding anniversary was coming up so we knew we had a good cover! “Its a special bottle we can all drink together on a zoom call dinner on our anniversary” No one was the wiser! So on the 22nd September, we joined our parents for a zoom chat and to crack a celebratory bottle of wine. It was so exciting to be able to see everyone’s faces as they read what was on the bottle! A week later we announced to our closest friends and siblings as well.
I felt like I was the most cruisy pregnant woman. Everything was going so smoothly during my pregnancy. All scans and results were coming back great, bub was healthy and we had found out after doing some blood tests that we were expecting a little boy! as we were now entering the second trimester and I was showing quite obviously, it was time for us to start really organising this announcement. I wanted the shoot to be a bit of a throwback to our engagement photos 11 years ago. We did them in a train yard with Alex in a WW2 military uniform and me in full pinup. So I ordered Alex an outfit and dug through my dresses to see what one I wanted to wear. A friend of mine has a private train yard with a recently restored R class that I was very attached to. I knew That I needed to incorporate that train into the shoot. It almost felt to me like a little mascot of sorts for our boy. Early in the pregnancy when we were in lockdown and I was going stir crazy, I would go up to the yard and run around taking photos of the trains, the landscapes, myself in cosplays… all while watching the boys finishing off restoring this particular train, so it felt like the perfect way to announce. So finally, on a warm and windy day, we dressed up and headed to the yard to shoot our announcement. While we were there Alex pointed to a train in the shed and says “I reckon our son would prefer that train over the R”. “Nah, our son wouldn’t want a diesel train darl! He’d like this big steam train like his Mumma!” I replied. After realising we would not agree on our son’s preferred train, we finished off the shoot and headed back home. That night we made it Facebook official! I was so excited now to be able to share our journey to parenthood with everyone. The world was coming out of lockdown again and I was proudly flaunting my bump around!
And then came those first movements. Everyone had told me it was something magical, but I still was not prepared. We were out for an evening drive in our M3, and well, you can take an M3 out onto country back roads without having a little bit of fun. Alex accelerated and I giggled having the time of my life. All of a sudden I felt this weird fluttering in my belly. I told Alex Id felt something but wasn’t sure if it was our son moving or if I imagined it. He accelerated again, and again i felt the flutters. We both burst out laughing. Clearly our little boy was going to be a motorsports fan like his Dad! I will never forget the exact bend I felt those first movements. We now call it Clyde’s corner every time we drive through it!
On Tuesday the 7th December, our world changed forever. We headed in for our morphology scan, no worries at all in the world, excited to see our very active little man on the screen again. In typical form, he was being stubborn and wouldn’t lay the right way for the sonographer to accurately get his measurements. he asked me to empty my bladder and we’d try again. Now our boy was laying correctly, but had his hands and feet up over his face. We were sent outside to go for a little walk to get him moving around a bit. It was raining so we couldn’t go far. People driving by probably thought I was the strangest human, dancing and skipping down the footpath holding my round belly. We went back inside and got started again. He was starting to cooperate, we could see his little face now, and his profile was so distinct. We could see clear as day he had the same profile as me! That nose was unmistakeable! The sonographer takes some measurements and that says we now need to do my cervix measurements. He was very quiet and kept getting me to move slightly and raise my pelvis. I was so blissfully unaware our world was about to change. He told us to go for another walk and he would come collect us. We wander around outside again for a few minutes before he comes to collect us again. He sits us down and tells us that he has just called Azra and that we need to go to birthing right away! We are confused, what’s going on? he tells us that my cervix is open and we need to go to birthing right away. So we head off to the car, incredibly nervous, but also sure that everything will be fine and its just a precaution. After all, I’d had surgery on my cervix many years ago, so maybe it just doesn’t look the same as a normal cervix?
We get to Maitland Hospital and head straight in to birthing. The midwives take us into one of the suites and start taking my blood pressure etc and getting everything ready for when Azra arrived. When she gets there she has a chat to us about what the sonographer has seen and tells us she will need to do an internal examination. I knew something was wrong when she got some of the midwives to have a look at what she was seeing as well. She comes to stand beside me and puts her hand on my arm. I could see the sadness in her eyes. “I’m sorry my dear, but your cervix is open and your membranes are exposed” I was in shock. What does this mean? She explained to us that with my cervix being open and my membranes being exposed the way they are, I’ve opened both myself and our son up to all kinds of potential infections and that we don’t know how long I’ve been open for. My head was spinning, this was all too much. Surely it wasn’t real. Everything was going so perfectly! We were given a choice. Get a risky surgery to stitch my cervix closed, which would be difficult to do with my membranes bulging through my cervix and could potentially cause us to lose him, or do nothing and let nature take its course. They left Alex and I to have the heart breaking conversation. We decided we would let nature run its course. We left the hospital numb and in shock. All our dreams for our life to come were ending before they even had a chance to fully begin.
The next morning we received a call from Azra. She had spent the night calling other obstetricians discussing our case and wanted us to come back in so herself and some of her colleagues could have a look for some extra opinions. After they did another examination, they discussed with us that they thought it may be possible to do the surgery. Were we willing to give it a go. If successful it would mean complete bedrest for the duration of my pregnancy, but it means we could potentially save our boy! Yes! Lets do it! 3hrs later they prepped me for surgery and rolled me up to theatre. It was a very stormy afternoon. Thunder was rumbling loudly and setting off all the fire alarms in the old hospital, meaning delays to being able to do the surgery. I laughed with my surgical team. Only me would this happen to! Finally the alarms were shut off and they were able to continue getting ready to operate. They told me they would give me a small needle in my back to numb me. “So an epidural?” I ask. “No no, just a little needle. Nothing like that” they smile at me. “You’re lying” I laugh, “I’m a birth photographer! I know what an epidural needle is and that’s it!”. They all laughed. “”Nothing gets past you does it!” After many attempts due to the gaps in my spine being too small, the epidural finally was successful and very quickly my lower body went warm and suddenly I couldn’t feel anything bellow my belly button. The table was titled almost vertical, with my head near the floor to use gravity to pull our little man back into where he was supposed to be. Me being the talker that i am, chatted away with everyone about photographer life while they operated. And just like that, it was done. Azra let me know that it was successful and my membranes didn’t rupture. She also told me that it was the most difficult cerclage she’s ever had to do, as I actually have next to no cervix due to my surgery years ago to remove pre-cancerous cells. I was wheeled into recovery. I was starving. I chatted the nurses ears off and they brought me biscuits and juice. Eventually I was moved back to maternity for the night and Alex was there waiting. Through the night i started getting feeling back in my legs and I was so damn excited when I could move my toes, but even more excited when I could feel our active little man happily doing somersaults.
The next day I was released home on bedrest orders. I was told I had strict toilet and shower privileges only! I spent the next few days watching movies and hanging out with my next door neighbours who were coming over to spend time with me. On the Friday, I lay in bed now feeling very sore. I assumed it was from the surgery. Our son, who we had now names Clyde, was rolling around and kicking his tiny legs. “Dude! Stop kicking the trap door” I laughed. My cramping got worse, but I didn’t think much of it, after all, I’ve just been through surgery. Of course I’ll be sore. Dinner was approaching and this particular night, I had a real craving for baked mac and cheese. So I sent Alex off on a wild goose chase to find me baked mac and cheese. While he was out, I climbed out of bed to take myself to the shower. It was then I realised that it may not just be cramps. I felt the dreaded lower back pain and knew I was in the early stages of labour. I waddled off to the shower and as soon as I removed my underwear there was a slight trickle down my leg. My membranes had ruptured. I jumped in the shower, feeling the waves of very mild contractions. When I got out, I packed my birth bag and the wrap I’d hoped I would’ve been putting a full term Clyde in. Alex came in the door, proudly proclaiming that he had found me backed mac and cheese! “I’m in labour”. He quickly dumps the chicken wings and mac on the dining room table and runs to grab what he may need for the night. I lean over the table scooping a few mouthfuls in and then we jump in the car.
We arrive at the birthing and are taken down to the furthest and most private room. Birthing suite 5. It was a large room with an attached private sitting room with leather couches and a view out over the flood plains. Azra arrived and held my hand, telling me I’m going to do amazing and explaining to me that we know what the outcome will be. Unfortunately at 22 weeks, Clyde would be too young to survive. I smile with understanding, heartbroken, but trying not to dwell too much as I knew I had a job to do to bring him here. I laboured for 12hours all up. And was very proud of myself that I went drug free. I had always wanted a water birth, but unfortunately due to my infections from my cervix being open, this was no longer a possibility. it was a long night, and poor Alex was exhausted, so the midwives brought him in a bed so he could get some rest. I couldn’t stay still at all, as I felt better labouring and getting through contractions while I was walking or standing leaning over the bed. While Alex slept, I messaged my girlfriends and my mum. Stef was counting through my contractions with me via snapchat. They were coming strong and fast now. And god were they getting long. I continued to sip my cup of tea, now completely naked as I suddenly couldn’t stand the feeling of clothes touching me! Our midwife for the night was Barb, a woman I’ve known since I was tiny myself. I grew up in the same cul-de-sac and her dog was best friends with our cat. It was so nice to have such a familiar face there. She kept laughing at me telling me there was no award for being a mater and going drug free. Finally Barb convinced me to get some rest. I climbed in to bed and Alex joined me so we could cuddle, his hand resting protectively on my belly. The lights were turned off and it was all very quiet and peaceful. Then I heard a familiar voice. It was Alex’s mums voice. “Its ok, I’m here now” she said softly. I knew her angel had come to collect our boy. Then I felt Clyde roll for the last time. I turned to look over my shoulder at Alex and told him his mum had come and that Clyde was safely in her arms now. The tears flowed and the contractions continued. That was around 4am. At around 6am the contractions were now very hard and I was wandering around wanting to see the sunrise. Barb could see I was exhausted and asked if I wanted some apple juice for a bit of a sugary pick me up. As I leaned over Alex’s bed, sway through the contractions I took a big sip of the juice. Suddenly I felt almost like a drop inside of me. I yelped in shock. What was that! Suddenly, it was like a bucket opened up between my legs as my water broke in full force. I remember Alex saying “Thank god I put my shoes back on!” Barb guided me back towards the bed and helped me climb on. She did a quick check and sure enough, Clyde was ready to make his entrance. He was breech, so coming out feet first. I gently let two contractions work his feet and little body out. But I still had to push for birthing his head. As his cord was too short for him to be brought straight to my chest, Alex joined Barb and cut the cord. Barb then placed our tiny boy on my chest. He was perfect! We held each other and cried and smiled and beamed and felt just about every emotion under the sun. I was so proud, I was so in love, I was so heartbroken. He was born at 6;27am on the 11th December 2021, at 24cm long and weighing 360grams. He had my nose and jawline, Alex’s eyebrows and hairline, my feet with the curled under pinkie toe, Alex’s fingernails. We could not have asked for a more perfect son!
We spent the rest of the day with our perfect little boy, taking a lifetime of photos, taking in every little bit of him. I introduced him to the world by “Lion Kinging” him at the window, I danced and twirled holding him, Alex played aeroplanes with him. While it was the toughest day of our lives, it was also the most beautiful, because we spent the day creating fun memories with Clyde that we will cherish forever. Our eyes full of tears, a smiles beaming and our hearts full of love.
The days that followed were hard, never did i think we would be planning a funeral for our son, while trying to move into the new house we had purchased to be our fresh new family home and trying to get our Convent ready to put on the market as well. But our family and friends rallied around us and helped us to get through it. We were overwhelmed by the outpouring of love in the form of flowers, cuddles and home cooked meals. It made things that little bit easier on us, knowing we were not completely alone. A few days after Clyde was born, we were sitting on the lounge watching tv and aimlessly scrolling on our phones. I stumble upon a picture posted by The Picnic Train (which is the company that operates the trains we’ve been using throughout the pregnancy). The photo was a 42 Class diesel train, and for those non train nerds following along at home, that is the exact type of train that Alex had pointed out at our announcement shoot saying that our son would love! The Picnic Train had operated that train (which doesn’t happen often) on the 11th December. Clyde’s birthday! Clearly Alex was right and that was our son’s choice of train. After a bit of research into the particular train, we found out it was built by ‘Clyde Engineering’. It was just way too much of a coincidence! So clearly we have a boy who knows what he likes! I wanted to incorporate his train into the memorial somehow, so I sketched a drawing of it into the guest book. On the day of the memorial, our beautiful friends Bec and Greg came to us with a gift. A model of that exact train! Colour and all! It was perfect! We absolutely treasure it for our little train loving dude! The memorial was incredibly special. We held it at Tocal Homestead, as that was where we got married so it just felt right. We had Clyde’s ashes put into his bear so that everyone could give him cuddles, and so, there on the exact spot that Alex twirled me on our wedding day, I twirled with my son, feeling so overwhelmed with love knowing I’d danced with both my men on that same spot!
Clyde has since made his presence known many many ways, reminding us that he is always with us. Showing us that he knows what he wants with everything. He changed us as people and made us parents. He made us better versions of ourselves. And he made me want to be strong and help other women going down this road. So this project is for you Clyde! I hope I’m making you proud! Because I know you are making me proud! we will love you forever and until eternity Clyde Theodore King! Thank you for choosing us!