Angel Families Project Part Two

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 second group of incredible mummas was brought together on a muddy but surprisingly warm July afternoon, with the sound of one of Clyde’s steam trains passing in the background, to share stories and honour our angels!

Considered a low risk for going into preterm labour, I never received an internal cervix measurement with my first pregnancy. At my 20 week scan, I did receive an external length of my cervix, but it didn’t provide us with the information that could have prevented our loss.

On 22 March 2020, when I was 22 weeks pregnant, at 10 am I felt like there was a concrete bag on my stomach. I ignored the pain for a little bit. ‘Pain is normal ’ was the message I’d received from my midwife. It was normal. As the pain worsened, my partner Jordan, and I decided we should go to the hospital.

Once we got to the hospital, the pain was so bad I couldn’t walk. The Emergency department sent me straight up to the birthing suit. We didn’t have to wait too long before a midwife saw me for an assessment. As she pressed on my tummy, I started bleeding, and I knew something was wrong. They asked me for a urine sample. As I went to the toilet, I saw a lot of blood.

I remember screaming ‘NO, SHE’S TOO LITTLE’.

In another room, a doctor came in to examine my cervix. On examination, they found I was fully dilated, with bulging membranes and I had been through the first labour stage.

The doctor took my hand, and she explained to me I was having this baby – soon. And babies don’t survive at 22 weeks.

I held onto the hope if I could stay still and calm, I could get my baby girl to 23 weeks. On 23 March at 4:28 am, I gave birth to my sleeping angel.

I didn’t even get to hear my sweet baby girl cry. Not a day goes by that I don’t think of my Lexie. I miss her so much! When you have a stillbirth, you not only lose a child. You lose the years of watching them grow and seeing the person they become. And you will always wonder…. What if?

In honour of Lexie we were able to raise funds to donate a cuddle cot to RPA, to help other families who go through similar experiences.

In August 2021 I discovered I was pregnant with my beautiful rainbow baby Elsie. Pregnancy after loss is so hard. Every pain and reduced movement caused me alarm. Each day was a struggle. However with the help of the cervical cerclage and amazing Professor Pennell and M3 Midwife team, I made it to 37 weeks, when I was induced and gave birth to a beautiful healthy Elsie.

We always tell Elsie about her big sister Lexie and how much she loves her. We light a candle for Lexie every night when we eat dinner. When we see rainbows or butterflies we know that Lexie letting us know she’s around.

My name is Kirby, I have been pregnant 5 times, with 7 babies (not counting the three super early losses), but we only have one living child – our beautiful daughter Piper Josie Channells who was born in April 2014. Our journey is a long, complicated and sad one. Thank you for choosing to read on.

One week before this gorgeous Angel Family Photoshoot at the beginning of July 2022, I gave birth to our 7th baby, a beautiful boy born at 16 weeks and 5 days – his name is Sawyer Greg Noel Channells. Turning up to this photoshoot was a tough decision, as I knew other families who hold a child only in their hearts and not in their arms would surround us. As hard as it was, I am glad we attended this day as I met some beautiful Mamas and heard about their Angels. I’ll start our journey at the beginning.

Piper, our first child was conceived naturally with an uncomplicated pregnancy. She was born via caesarean on the 4th April 2014 because she was transverse and our Obstetrician was concerned that if I was to go into labour that her umbilical cord might prolapse and potentially deprive her of oxygen. Piper was born at 39 weeks gestation and is now a gorgeous and sassy 8 year old.

We waited a few years to have another baby. We got pregnant naturally with our second child Coco Jessie Channells after five months of trying. Pretty normal. Coco’s pregnancy was easy and uncomplicated with everything perfect, just like Piper’s – until it wasn’t. Coco was stillborn at 35 weeks 6 days gestation on the 29th May 2018, which was three weeks prior to her scheduled caesarean arrival date. I had just started maternity leave on the Friday and over the course of the weekend I noticed her movements become less frequent or become non-existent. You hear people say things like “the baby is running out of room, so the movements slow down” – which is a total lie, a baby’s movements should never reduce because they run out of room, they will change based on growth and become more of a rolling motion rather than a sharp kick, but they should never slow or stop. 

So I went to the hospital for reassurance, thinking everything was fine. My gosh, was I wrong. The midwife couldn’t find a heartbeat using the doppler. They brought in a portable ultrasound machine where a specialist Obstetrician and Sonographer attempted to find our baby’s heartbeat. I heard the words “I’m sorry, I cannot find a heartbeat, your baby has died”. The words no expectant parent wants to hear at any stage of pregnancy. It hurt, I cried, I wanted to be left alone. I called my husband Daniel who was at work and he arrived an hour. On his way to the hospital he called both sets of parents. Our Obstetrician came and tried to comfort us, she was just as heartbroken as we were. The process of the million blood tests, questions and a formal ultrasound to confirm Coco’s death was confronting and hard to deal with – but something that had to be done. We tried to find out her gender, but she had her legs crossed as we had wanted a surprise, so we didn’t know if she was a boy or a girl at this stage.

Once the formalities of her death were complete we were sent home to process her death, to tell Piper and to pack a hospital bag, as we needed to be back at the hospital for a 7am caesarean. Coco was breach and had been for quite some time, so she was always going to be born via caesarean. We came home and had to tell our daughter Piper (who was four at the time) that the baby in Mummy’s tummy had died, that her little brother or sister had died. My gosh, this was an incredibly hard thing to do. For ourselves and for Piper. We spent that night as a family holding my belly and trying to make as many memories as we could before we had to say goodbye forever. Because at this point, Coco was a part of me, she was still inside me. Both sets of parents/grandparents came to support us. I don’t know what we would have done without them.

The next day Coco was stillborn via caesarean. We found out that she was a girl and immediately named her Coco. A name that her big sister had her heart set on. If Coco was here with us today, she probably wouldn’t have had the name Coco. It was nice to be able to give Piper the opportunity to choose her name and feel closer to her little sister who she was not going to be able to grow up with.

At hospital, we got to spend three beautiful, yet terribly sad days together as a family with the use of a Cuddle Cot from Bears of Hope (donated by a bereaved family). Piper met her little sister and was so incredibly amazing with her. She behaved just like any big sister would have behaved with their new (live) baby sister. We were able to get some professional photos taken by an organisation called Heartfelt. This organisation is filled with professional photographers who donate their time to photograph moments for families just like ours. These photos are something that we treasure so dearly. One of the only physical things we have to remember our Coco. 

In the months after Coco’s death we wanted to make a difference and support some of the organisations that supported our family. So we started a little business in Coco’s honour, a legacy for her where I hand make bath and body products, and most recently polymer clay earrings. From every item purchased we donate money to three organisations (Bears of Hope, Heartfelt and Stillbirth Foundation Australia). Our website is www.cocosfizz.com.au if you would like to have a look.

Our most current challenge is conceiving. Since we lost Coco in May 2018, we conceived again naturally in the October 2018, only to have a missed miscarriage somewhere between 8-9weeks. We then continued to try and fall pregnant with the assistance of Clomid, and with no luck. We were referred to a Fertility Specialist and in the November 2019 I had an ultrasound which found potential endometriosis, and had a laparoscopy to clean it out after blood test markers came back. Since then we continued to try naturally but with the assistance of Letrozole, with no luck. In April 2020 we started our first IVF stimulated cycle. We transferred one embryo which we received a negative pregnancy result. We then tried to do a frozen embryo transfer in May 2020 but both embryos did not survive the thawing process (apparently this is really rare). We did a second IVF stimulated cycle in June 2020 where we transferred two embryos. We finally got a positive HCG result, but it was only 22, with repeated bloods having a negative result a few days later (an early pregnancy loss). We did another frozen embryo transfer and another early loss. We tried for our next IVF stimulated cycle in August 2020 where weirdly I ovulated before my first scan at around cycle day six – so this cycle was cancelled. Our third IVF stimulated cycle was in September 2020. We transferred two embryos and we received a positive HCG result. The numbers kept on climbing. YES, we were pregnant! We started getting excited. We then had a scan around 7 weeks. At this scan it showed that there were two babies (OMG Twins, we were so excited!). Then again our world fell apart. Baby A was two weeks behind Baby B and probably wouldn’t survive. And Baby B had implanted on my caesarean scar which is a rare form of ectopic pregnancy and life threatening for myself and the baby, and if that didn’t happen I could have lost my uterus. So we made the difficult decision to schedule a laparoscopic procedure to remove the baby from my caesarean scar. This was a tough decision and one that I think about every single day – the what ifs of infertility and pregnancy loss. At this time the baby that was two weeks behind still had a heartbeat so we gave him/her a chance. The following week there was no heartbeat, so more surgery was scheduled. In March 2021 we did a frozen embryo transfer (our last embryo from that cycle). Again, we got a low positive result, but that fizzled down to nothing a few days later. 

In July 2021 we did our next IVF stimulated cycle (this should have been our fourth egg collection) where I only had one follicle, so the cycle was cancelled, and I was given a trigger shot and tried naturally to no avail. In September 2021 we did our fourth stimulated IVF cycle where we retrieved 5 eggs. We transferred two embryos and had another negative result. In October/November 2021 we did our fifth stimulated IVF cycle, and again transferred two embryos with a negative pregnancy test. On embryo transfer each time, my uterine lining was perfect, I was on Clexane and Prednisolone with my protocol to help with implantation – but it didn’t work. We had an appointment with our Fertility Specialist who suggested that I have an operation to repair my isthmocele – which is something to do inside the uterus and my caesarean scar. So it basically means that I have too much scar tissue – which could have been the reason why the emrbyos weren’t implanting. Our Specialist said that this type of surgery wasn’t proven to make a difference but if we wanted to “turn over every stone” along this journey that we should do it. So the surgery happened in December 2021 and ended up being more in depth than what our Specialist thought. So we had to postpone our next IVF attempt a few months to allow my body to heal. 

We then did our sixth stimulated IVF cycle in March 2022, which is where we conceived Sawyer. We transferred two embryos and were pregnant with twins. During the embryo transfer the Fertility Specialist (which wasn’t our usual one) noticed a 1cm polyp on my cervix, she said this wouldn’t be an issue to the embryos implanting or during pregnancy. We finally got a positive result and we were so excited. Everything was great and there were two heartbeats at the 6-7 week scan, we were pregnant with twins. But sadly at the 7-8 week scan Baby A had stopped growing. Our Baby B  (Sawyer) was doing so well and continuing to grow each and every scan we had. And we were being monitored 2-3 times a week by our Obstetrician. I was taking progesterone pessaries and almost every time I inserted them, I began to bleed. At 10 weeks our Obstetrician removed the polyp in her rooms. I didn’t have any bleeding after that. We had our 12 week scan and everything was perfect. Our baby Sawyer was growing well, measuring a few days ahead and came back low risk during the nuchal translucency scan. Five hours later I was sitting on the couch and noticed moisture, I got up to go to the bathroom and was bleeding quite severely and with multiple large clots and lots of blood. We called our Obstetrician and Fertility Specialist. We thought the worst, but a scan at the hospital showed that Sawyer had a strong heartbeat. I stayed in hospital overnight and checked Sawyer’s heartbeat again the following day. Again, it was perfect. 

We had a formal scan the following day, which showed that my cervix had shortened, from around 30mm to 23mm.  At 14 weeks 2 days I went in for surgery to put a cervical suture in place to stop my cervix from shortening. This worked with no complications. On the Saturday I was 14 weeks 5 days and after a shower I dried myself and then some fluid came out, dripping and first and then a small gush. I phoned our Obstetrician and she asked me to go to the hospital to get checked. Sawyer still had a great heartbeat and the Obstetrician on call said that the fluid looked to be reduced, but that it was difficult to see on the scanner they have at the hospital. Our Obstetrician asked the midwife to do a vaginal swab to see if it was in fact amniotic fluid. This came back negative so we were all happy. On the Tuesday at 15 weeks 1 day we went in for a formal scan to check the length of my cervix, but after telling the Sonographer about the fluid loss she just checked the fluid. We went into see the Specialist Obstetrician (which was the same lady who confirmed Coco’s death). She said that she didn’t like what she saw on the scan and told us that there was no amniotic fluid surrounding Sawyer, which meant that the chances of him surviving was extremely low, and the chances of me getting an infection was extremely high. I had a massive panic attack, which I have never experienced before. She, along with our Obstetrician admitted me into hospital, where I had 2 types of IV antibiotics two and three times a day. Our Obstetrician came in daily to conduct a bedside scan and each day Sawyer had a really strong heartbeat. She also spoke to many of her colleagues, some of which specialised in the premature rupture of membranes (PPROM). They all decided that my cervical suture needed to come out due to the high risk of infection. We spoke with our Obstetrician and we said that we would leave the suture in there at least until a formal scan the following week. But then things changed, I began bleeding slightly with a large gush during the early hours on the morning on the Friday (15 weeks 4 days). Our Obstetrician then said that the suture needed to be removed ASAP, and we went in at 12pm that day. The suture was removed and since I was on bed rest, it shouldn’t make too much of a difference. Each and every day we had a bedside scan and Sawyer’s heart was strong, still little to no amniotic fluid. 

The following week at 16 weeks 3 days, after 10 days in hospital I went off the IV antibiotics and onto oral antibiotics. The next day I went for a formal scan which showed great growth, which meant the placenta was doing its job and giving Sawyer everything he needed. It also showed a small pocket of fluid, which we were all excited about, medical professionals included. We started to get hopeful that everything was going to be okay, even though we knew that to reach viability for Sawyer we needed to be 23 weeks, which was still many weeks away. The next day at 8am at 16 weeks 5 days I went to the bathroom and noticed a bulge when wiping. The midwife checked it out and said she thought it was the umbilical cord. I knew this was bad, and burst into tears. Called Daniel and Piper (who had tested positive for COVID earlier in the week and couldn’t come to visit) and told them. Piper said that she and Coco had spoken and that Coco said that would look after this little baby. We all burst into tears. 

I phoned our Obstetrician and told her what the midwife had said, she burst into tears too, and said that she would organise the on-call Obstetrician to come and confirm it. She came in and confirmed it quickly without even needing any of the equipment she ordered. My Mum came in and held me for a few hours while Daniel wasn’t allowed (due to COVID), thank heavens she was here. A few hours later I was transferred to the birthing suites where they had made a COVID safe room where Daniel was allowed to come in. This also happened to be the same room where we spent our time with Coco. I had a bedside scan that showed that Sawyer no longer had a heartbeat. An hour or so later I was given a tablet to bring on labour. Within about 30-40 minutes Sawyer was born. We held him and were told that he was a boy. We didn’t know what to name him so we looked at our list of names. We phoned Piper and my Mum and spoke about names. I had liked Sawyer for quite a long time, so we decided to name him Sawyer. His middles names are Greg after my Dad, and Noel after Daniel’s Dad. It was an extremely sad an emotional experience and I wasn’t able to get the placenta out because of this no matter how hard I tried. I went in for basically a D&C to remove the placenta and clean everything out. 

We spent the rest of the afternoon with Sawyer, Piper and my Mum came in to meet him and cuddle him. Piper was again the best big sister she could be. We spent the next day with his and then went home in the afternoon. It was tough leaving, it always is leaving a hospital with empty arms when you went in there with a pregnant belly. Daniel and I came back for a few hours everyday the next week before we put him into the care of the funeral directors. We saw him once more in their viewing room to say goodbye, write him a beautiful note and just give him a cuddle. The last time we were going to be able to do that. And then one week after he was born, one day after saying our final goodbyes to Sawyer we had this photoshoot. Wow! Writing this, feeling all the sadness flooding back in – how did I manage to be a part of this special experience. Since then I’ve just felt numb. I can’t believe we don’t get to take another baby home. 

Living each day as a bereaved parent is a challenge. As soon as you get pregnant you start to make a life for that little person growing inside you (or your partner). And when that life gets ripped away, it is not fair, and it is not something you ever forget. This type of loss changes you and the person you are. Time does not heal all wounds but the pain does change and shift and it gets different. We share our story in the hopes that it lands in the ears of expectant parents. Maybe it will make them consider their baby’s movements and hopefully helps them to save their baby’s life. Or maybe our story is similar to your own, and reading it makes you feel not so alone.

Thank you for reading my very long a painful story.

Lots of Love,

Kirby, Daniel, Piper (Baby 1), Coco (Baby 2), Sawyer (Baby 7), Baby 3, Baby 4, Baby 5, Baby 6.

On the 15^th of September 2020 I found out that I was pregnant with baby number 3. We were over the moon with excitement!

We had a dating scan at around 7 weeks and measured a few days behind what I had thought, but didn’t think any more of it as everything seemed fine and there was a nice strong heart beat.

On November 19^th we went for our 12 week ultrasound, and the first thing the ultrasound technician said was “I am so sorry”. I immediately thought that there was no heartbeat. But she continued on and said your baby has anencephaly which you can see here. The head and brain have not formed how they should. I was uncontrollably crying and my husband was doing what he could to console me, while also feeling the same pain. We went straight through for a talk with the doctor at the clinic who explained it more in depth and let us know what our options were. That whole meeting is just a blur to me though and I did not absorb a lot of information.

We shared this news with some of our closest family and friends to ensure we had the support around us that we needed to make a decision that was best for us.

The next day our local hospital rang us and asked us to come up and have a meeting with the doctors and midwives there. I got a lot more information out of this as I had done an insane amount of researching the night before. During this meeting they asked if we wanted a second opinion from a maternal-fetal medicine specialist that would be visiting the hospital in 2 weeks’ time. We definitely did! And although we knew what we had seen at our last ultrasound and could clearly see his condition, there was still a slight glimmer of hope that it was a mistake, and everything would be fine.

At 14 weeks we met with the MFM doctor and had another ultrasound and he confirmed our baby definitely had anencephaly. It was heartbreak all over again. We asked him if we continue with the pregnancy, is our baby able to be an organ donor, maybe our baby can give a second chance to other babies. But unfortunately, this wasn’t an option. The MFM doctor gave us a referral to get the Harmony test performed to see if there was anything genetic or otherwise going on and we also decided to find out the gender.

When the results came back it showed no other issues and we found out we were having a boy! So many mixed emotions again. Now we really had to consider our options and make a decision. Our options were termination, early induction or continue with the pregnancy. During this time our family and friends gave us so much support and space to make the decision that was best for our family, and that was exactly what we needed.
I knew our baby was never going to come home with us, but I also did not want to choose the day we lose him. So, we decided to continue with the pregnancy.

I had a very easy pregnancy, and his kicks and punches were so strong. I tried so hard to just live in every moment I got to spend with him, but in all honesty, I was very disconnected from my pregnancy for quite some time. I think this was my body trying to protect me from the pain and heartbreak. I was trying to enjoy and love this time but had to think about funeral plans and songs instead of nursery themes and colours.

At around 36 weeks I was getting irregular contractions on and off each day and night. But I really did not want to go into labour so did everything in my power to get them to ease off. There was no bouncing on balls or pacing hallways like previous times. I wanted this baby to stay put as long as possible. I wanted to protect him for as long as I could. They really ramped up on Thursday the 6^th of May. I messaged my student midwife and showed her the contractions I had been timing. She was actually away and had ended up in the emergency room in another hospital herself! I eventually fell back to sleep and woke up when my husband got up for work at 3:30am. I told him I was fine and to go to work but to keep his phone close by. An hour later I told him to get home ASAP! I rang my mum and got her to come down to be here for our 2 older kids and by 6am we were in the car on the way to the hospital. I was adamant to have no pain relief and minimal checks and interventions to try and give us the best chance of meeting him.
My student midwife had rung the staff at the hospital so that they were aware we were heading in and were prepared for our boy.
We got to the hospital at 7:30 and our sweet boy, Theo Joel Wilkes, was born at 8:34am on May 7^th. He weighed a perfect 4lb 2 oz.

Our photographer just missed his birth, but one of the midwives had my phone and took so many photos and videos for us. We will treasure them forever! I often find myself going back to those videos to hear his little noises.

We called a few family members and got them to come straight to the hospital to meet Theo while he was still with us. He lived for 3 perfect hours and knew nothing but love. He passed peacefully in his big sisters’ arms at 11:30am. Over the next few days, we had so many amazing family and friends visit us, call, message and send their love and thoughts.

We stayed with Theo in the hospital for 3 nights. During that stay we took photos and videos, hand and footprints, had the kids come and make memories with him and just shower him with every ounce of love we could. The day we went home was just as hard as the day he was born. Having to leave Theo in our room and then leave the hospital with empty arms and broken hearts was excruciating. Our student midwife was there for us every step of the way and it was a little easier being able to pass him to her. He was left with someone we knew and who had become a big part of our journey and lives.

It has been a very challenging time for our family since losing Theo, and we are forever grateful to our family and friends who have been by our side, respected our grief and showered us with copious amounts of love.

We will be eternally grateful to our photographer Verity, our student midwife Ella, and all the doctors and midwives we met along the way that did everything they could to make this journey easier on us.

Sweet dreams our boy, until we meet again.

Kristy

My husband, Joey and I had been trying for a baby for a long 4years & had Started an IVF cycle when i found out i was pregnant. We were soooo excited!!
Id done so much to become pregnant- cut out gluten, sugar, alcohol, processed foods, any chemicals in house, id done seminars, seen naturopaths, surgery to have my endometriosis removed, was on all the vitamins i needed -anything i could try to help me fall pregnant, i did it, so to finally be pregnant was a dream come true.
I Suffered from Hyperemisis Gravidaram from very early, but as sick as i was, i was just so grateful to be pregnant. Its all ive ever wanted in life-to be a Mum.
We had the early non-invasive chromosome test done and our 12week scan results were all normal and good. We found out we were having a little boy! The first boy in the family. Im one of 3girls and have 5nieces so we knew this little miracle was going to be special  id already bought so much in the 4years trying to conceive, i literally had a “baby room” dedicated to my future children of all the things id bought already! Im a big shop-a-holic & bought soooo much for him. From birth up to size 2+. I was so excited to finally be pregnant.
At 18weeks, our morphology scan, we got asked to come back a couple of weeks later just to recheck a couple of things the sonographer was concerned about. This was the beginning of our whirlwind journey.
We returned to be rescanned where the sonographer explained she couldnt see part of our baby’s brain, & that she’d “seen enough normal hearts to know when something is abnormal” & would really encourage us to get some more specialised opinions on it.
We were then referred onto the JHH Foetal Medicine Unit to be seen and get further scans done, which all happened quite quickly. I was scanned numerous times over the next couple of weeks & we were then taken into a private room after & explained that our darling boy had No sign of his corpus collosum.
(The corpus callosum is a large bundle of more than 200 million myelinated nerve fibers that connect the two brain hemispheres, permitting communication between the right and left sides of the brain.)
Aparently if its not there at 19weeks, it wont develop/grow after that.
We also got told (by mutiple sonographers) his heart looks abnormal in the chambers & we would need to see a foetal heart specialist for a detailed scan to investigate further.
Because the scans were showing the missing corpus, i needed to have a foetal MRI done to see brain in detail ASAP.
The first MRI confirmed NO CORPUS. I didnt know alot about this, but it was explained to me (quite abruptly in that private room) that we wouldnt know what the impact of this would be until bub is here & as he grows older, but so much could vary in his development & the scale of how serious it would affect him is unknown. I questioned whether it could grow as i know babies brains continue to grow & develop up to age 5! But, they said that it would not grow now. I asked if we could transfer cells-if we could somehow grow or transplant this, if there is anything at all that could be done but the answers were all no.
These weeks and all the weeks to come, i was an absolute nervous wreck to say the least. The knots in my stomach, the stress & worry, i couod barely function, But i was determined to do/try everything in my power to help my baby. After all, he was my miracle, & miracles happen to those who believe!
I researched into anything/everything. Case studies, i read forums of people that have had the same experience with the corpus, i researched the brain, foods & their healing properties, u name it-i read it! I did find that bone broth has incredible healing benefits & that it has a pround ability to regenerate nerves/neurons (which i needed in his brain!) So, i sourced bone broth straight away, and i started drinking that mutiple times a day, along with every other superfood i had googled for brain development in babies & heart health. I saw a naturopath & got a product from him for brain, i bought every heaping crystal and rested these on my stomach & carried them with me everywhere, i prayed endlessly. I found a ‘healer’ in bali and i saw him.
At 7months i had to have an amniosentesis done as they were concerned that because baby had 2 things wrong with his major organs, that he might have a rare syndrome of some sort. Yet more bad news to be told & stress.
The amnio was awful to get done being so far along & posed risks of preterm labour, infection etc. The amnio results & microarray both came back normal which was a relief but we still carried our stress of the other problems & what that meant for our baby’s future health.
I had my appointment with the foetal heart specialist, who after an indepth scan said that his heart was fine! There was a small problem with the aortic leaflets opening/closing which would most likely rectify itself & if it didnt would just need a small procedure done after birth sometime but otherwise fine. While this was good news, i still didnt feel right about it as every scan id had prior had said abnormalities, so i was organising a 2nd opinion of another top foetal heart specialist in sydney.
At 24 weeks i had another MRI, & to everybodys shock, the corpus was PARTIALLY there!!! This had never been seen before after it not being there at all! I was so happy. I dont exactly know what did it-if it was the bone broth or everything combined, but it put fire in me that i was going to proove them all wrong. I was determined to get that corpus there & his brain would be healed. I had to try to keep my mind positive, as hard as it was, & keep the faith, because if i didnt, what hope did we have?
At 28 weeks i had another MRI done. A few days later another scan. Every scan i would be nervous wreck. I literally wouldnt breath i was so anxious. & every scan, i had received bad news. I couldnt believe it that day when they told me that the corpus was COMPLETELY there!!! They couldnt explain it. They were shocked-they’d never seen this haplen before! I cried. I remember saying this is the best day, the best news ive had in a long time! For once, i felt i could breathe a little (or so i thought!)
I sat on the bed with my crystals for another scan. The sonographer was scanning for a long time. She left and brought another sonographer in aswell. By this time, after having sooo many scans i knew something was up. I asked if everything was ok. I got told to get dressed & sit in that dreaded room & they will be with me soon. I hated that room. Id been given so much bad news in it. My legs were shaking and my hands. I was on my own. My husband wrked away FIFO in WA so this whole pregnancy and scans/MRIs etc i was mostly on my own. The head specialist came in and said “theres a problem with babys blood flow and i needed to get to RPA hospital in sydney straight away-we may need to deliver baby”.
I was all over the place in my thoughts. I didnt know what to do, what to expect, but i certainly didnt expect that! Aswell as that-i had to drive myself to sydney NOW!!! They had arranged a scan for me i just had to get there as quick as i could. I rang my mum & she said to pick her up on the way. I had nothing with me just what i was wearing. I frantically tried getting in contact with my husband’s worksite & for him to call me back asap. (Time difference, no mobile phones onsite & being so far away) about an hour later Joey rang me and all i could say was he needs to get home asap, baby might be coming. That all i really knew at that point.
It was a stressful drive getting lost etc in syd & finding it and trying to be fast & safe & trying to breathe & think. I was so anxious. When i arrived i didnt wait long despite the huge amount of people waiting for their scans, they were expecting me. In hindsight maybe this should have alerted me things were more serious than i thought? I was scanned & sent away to hav a little break/something to eat/drink and come back for more scanning. I felt sick to my stomach. I returned and scanned again more. The scanner went and got another doctor to come in and scan aswell after her. I didnt expect what was coming next.
The top professor of Foetal medicine RPA came in and said that my baby had suffered a very large brain bleed. He said it was very serious And that my best option at this point would be to ‘terminate’ my pregnancy. I was 28weeks pregnant!! My son was a fully developed baby that could survive earthside this far along, not something i just ‘terminate’. He explained that so far along i would have to present to a board for approval, but it would b approved as there would be no quality of life for my son & he would support & encourage that choice. Its like a stroke. He could b left paralysed, non verbal, we wouldnt know. But he said they dont see these things happen while in utero & it would b catastrophic. He explained the process of what they would do if i chose this (they would put a needle in babys heart to stop it, then i would deliver baby). This didnt sit well with me at all. I couldnt bare the thought of that.. I could never ever live with myself. He advised me to go home & think about it, discuss it & let him know. I bawled my eyes out in the hospital hall. I felt like my whole world was caving in. Blow after blow. That day was cruel. How did my good news id recieved only hours earlier from an MRI only 2days ago that showed his brain was perfect, now be that he has had a major brain haemhorrage? How does this happen? And if there was a problem with the blood flow in newcastle why send me to drive to sydney on my own hrs away-could they have done something to help him in newcastle? I was devastated. & And i now had to drive home with my mind an absolute mess, shaking, hard to breathe, crying. So many thoughts going through my head. I dont know how i got home safe.
When i arrived home, it was very late, Joey had arrived home. My obstertrician called us and he’d been told the news and also said it doesnt look good. He arranged for another MRI to be done the next day at the Matar Hospital. Ive never prayed so much. I had the MRI done & anxiously awaited the results. He rang again that night & confirmed it was a very large brain haemhorrage that covered most of his brain & we should consider our options that had been spoken about to me at RPA. These are conversations you never imagine talking about let alone thinking about. It all just seemed like a nightmare. This surely all couldnt really be happening.
Joey had to fly back to work, but my obstertrician had arranged a meeting for the coming days back at JHH FMU with a panel of health specialists. It was in that dreaded room. I hate that room! Our obstertrician, the head FMU Doctor, another doctor, a specialist & a social worker, myself & my sister came with me. We had a huge list of questions we had thought of & we had hope. Desperation for good news. We were both keeping very positive, until that meeting. I cant explain what & how we got told the things we did but It was absolutely brutal. I remember being told that we were looking at “global development problems” & that if we were concerned about the problems before without the corpus, than these problems are way beyond that. That our son would b a ‘vegetable’ not able to walk/talk or anything. No quality of life. Everything we asked/questioned was pretty much shut down. We both cried. We couldnt believe it. My mind was a mess again, shattered. I couldnt breathe. How on earth was this happening to my baby. What did i ever do to deserve this?! Despite everything i still tried to remain positive and look for a way to heal/fix this.  Even one of the doctors in that meeting told me hes never seen someone be so positive. I was Trying/holding onto anything i could to jst keep me/us going.
I told my obstertrician i wanted more opinions & it was arranged for a top neurologist at JHH to have a meeting with us asap and assess the MRI results. Joey flew home again for this as he knew what the last meeting brought me-he had to be there.
All i did was pray, and pray some more. And drink broth & try so hard to be positive.
I said “they were going to learn from us/him-the power of food & healing etc. That we would be teaching them that they dont know everything & they can be wrong.
At the meeting the neurologist confirmed the brain haemhorrage, but in looking at the images had said it had happened in his cerebellum, not the majority of brain as they thought.
The cerebellum (“little brain”) is a structure that is located at the back of the brain, underlying the occipital and temporal lobes of the cerebral cortex. Although the cerebellum accounts for approximately 10% of the brain’s volume, it contains over 50% of the total number of neurons in the brain.
This was “better” than it being where they first expected & when i questioned how this would impact baby long term, he explained this part of the brain controls fine motor skills etc, so me being positive me, was talking/questioning of early intervention with baby after birth & rehab etc & we could give him the best chance of recovery. Being aware of it , we would be ahead of knowing early therapies & how to best handle it.
After that meeting Joey and i had to have the serious, controversial conversations posed to us about our son, conversations on things you dont ever want to think about, let alone talk about, but that meeting gave me perspective & hope again, & i was more determined than ever to keep fighting for my son. Such a rollercoaster of emotions and stress. We both quickly came to the decision that we are not god-we didnt want to make that call, we couldnt do that. We had miracles and we will continue to fight for ours. We had glimpses of things to hold onto & despite everything that had happened, They had said he was very strong & he would make it, they just dont know the damage done.
I questioned my Ob whether we should give birth now so hes out & safe, but they had said he is much better inside me, getting as much nutrients, growth etc as possible from me.
So, i researched even more, i reached out to medical shows in hope of advice/answers. I had reiki done. I turned to chinese medicine. In china, if you have a stroke you have accupuncture & herbs, so thats what i did. 3sessions a week, herbs twice a day along with everything else i truly believed my darling boy was meant to be here, he was a miracle and i would continue to get miracles & prove everyone wrong!
In the weeks that passed we had set up a plan with the obstertrician, that our son would b born early (36wks) via caesarian to avoid any risk of further damage to brain or any stress in labour. We met with the NICU team at JHH where our boy would stay after birth.
Everyone at the JHH in FMU & NICU knew our casefile. We were talked about alot & so many meetings were had about our pregnancy so we were in safe hands, but
I was still waiting for that 2nd opinion appointment for his heart in sydney.
I continued to just try to do everything absolutely possible to heal our son in the meantime. I kept so positive. So strong. So did he. Every MRI i would talk to him & ask him to be still while they try to get clear images of his brain. (Very hard on a foetus!) & he knew – he was amazing & always cooperate. I knew he was a soft, placid soul. I could just tell, i felt it.
During MRI’s I would close my eyes & visualise a completely normal brain & just pray the same thing over and over..i feel like the only thing on my mind ever was praying, researching more, reading more -what i could do to help. It consumed me. I couldnt read enough otherwise i could miss vital information. Knowledge was power! I was a living ball of stress & worry, i cant explain the state i was in. I dont know how i even functioned. I remember i was constantly shaking, knots in my stomach and throat, my heart racing. I had so much pressure on myself to heal him.
Still vomitting from my hyperemisis i jst kept putting my broth and herbs and superfoods in my mouth despite how i felt. I had to. I was his mother and that was my job to do whatever possible to help him.
A couple of Weeks later, I had my baby shower for my little Prince, which was a beautiful celebration for him, but also very hard, putting on a happy, brave face whilst carrying so much stress and worry. Not many people actually knew what had happened-my journey & what i had/was going through, not knowing what was coming-Just praying for a healthy baby.
I had been feeling really sick, i was going to go back to hospital to be put on fluids but i put it off as it was such a big day. Now, i wish i went. Maybe things would be different? 2days later in my accupuncture session i felt extremely unwell. Different to the sickness i normally feel. It overwhelmed me. I had to ask her to remove the needles. I asked Joey to take me to hospital for fluids. I had been on a drip many times prior due to my HG, but i also mentioned i hadnt felt bub move as much. They put me on the bed with the heart belt monitor. Unbeknown to me, they knew something wasnt right and called for my ob who came & brought in a scanning machine to check on bub. Il never forget those gutwrenching words- “there is no heartbeat” im so sorry. That was the last thing i ever expected. He was strong & a fighter & I was fighting so hard for him. I loved him soooo much already. This couldnt be real.
I broke. Joey broke. I remember saying over and over “its wrong, that machine is wrong” & Joey saying to me “he is gone bubby, we’ve lost him”. I didnt want to believe it.
We went over into my obstertricians rooms with better scanning equipment and he had called the FMU head doctor on our case & she came and scanned us on the newer machines. She confirmed there was no heartbeat, and his brain was covered in fluid-he had another brain haemhorrage, which had taken his life.
I question all the time the what if’s-what if i had of gone for fluids 2days earlier? What if he was born earlier after the first bleed? Did i do enough? Could i have done more to save him? Was i doing too much? Was it his heart that caused this?
I had prayed to god & asked him to be in god’s hands-if he wasnt going to have a safe, healthy, fullfilled life here, to have a life painfree life with him-so, did I ask for this???
I couldnt believe my darling boy had gone. When did he go? Did he hold on for his shower knowing it was a celebration for him?
They gave me 2pills, sent me home to pack my bags & come back in 2days to birth my son. Coming home to a house full of baby shower gifts, of clothes and everything ready for a baby ive waited nearly 5years for & know im never going to get to bring him home. The unknowing of what is coming-labour, birth, what he will look like, my feelings. His name. Getting through the next day, knowing that these would be last days of him being in my tummy, of me being pregnant with him. With my stomach contracting i just kept praying for this all to be wrong & him be alive & ok.
The day of birth I didnt want an epidural. My mindset was that i deserved & wanted to ‘feel the pain’. I couldnt save him so i needed to feel it all. At 8months, My darling boy Jonah Cruze Sommerville was born sleeping peacefully at 5.40pm on 3rd March 2016. I held my breath as they pulled him onto me waiting/wishing & hoping for him to be breathing. He was so incredibly perfect and beautiful. He looked every bit the angel he is. My heart was so full of love -that incredible indescribable love, and on the flipside it was just the start of the absolute heartbreaking pain, torture & suffering of loosing a child. There are no words. Its cruel. Its unfair. Noone should ever have to suffer this pain.
I didnt sleep the whole time. We had 24hrs with him in a cuddle cot, so i had to lap up every second with him. We had him blessed, photos taken & the next day bathed him, dressed him, had handmoulds taken & our closest family briefly meet him. i lapped up every second with him. I was so in love with him. I literally couldnt breathe at the thought of not having him with me.
Leaving the hospital without him was the hardest thing ive ever had to do & the beginning of the real suffering to come. Coming home empty arms to a life meant for all of us together. Our future as we dreamed of & hoped for taken from us. To have to organise a funeral. And to tell everyone. That made it all even more real.
Loosing Jonah, killed me-part of me died that day too. I will never be the same person. I actually dont know how i survived & am still here, because I didnt want to be here any more. He was my reason, he was my purpose. He was my everything. I didnt have anything to get me up in the morning. I couldnt see ever feeling happy or love anymore. And it scared me because i now knew how powerful that love is- & i also now knew the pain of loosing that love. What was the point of life? I questioned so much. There is no justification for loosing a child. None.
There arent enough words to describe the pain of loosing a child. None powerful enough to truly describe it. It is living hell. Torture. My body literally hurt, my soul hurt-the pain became physical. It was suffocating. A heartache & pain noone should endure. I would have panic attacks where my skin just felt like it was so itchy & the pain i wanted to scratch & rip my skin off, and get out of my own body. My mind took me to crazy places. Irrational illogical thoughts. I couldnt sleep. I couldnt function. I didnt want to face the world. I didnt want to go out or see anybody. I didnt want to ‘burden’ anyone with my feelings being so broken. I didnt want to ‘wear a mask’ & pretend i was ok. I was in so much pain all over-i absolutely can see & believe now that you can die of a broken heart because it literally hurts your body beyond anything you could imagine. Its crippling. Debilitating. Cruel. Loosing a child is torture. I just wanted to be with him, i couldnt bare this pain. I was beyond broken, drained in every possible way.
We had to get through organising & holding his funeral service, which was so incredibly hard. To bury our son after waiting 2weeks for him to come back from his autopsy. That day seems a blurr. He did give us a a big rainbow that day afterwards-so I know he was with us watching over.
I was lucky enough to see him the day before his service & bring him home & spend a few hours with him at home. Reading to him books, a letter id written, showing him our home, holding him,smelling him, smothering him in kisses & cuddles. He was so perfect & beautiful.  Those couple of hours filled my heart as i had my son with me again after 2weeks, but in the same split second i was quickly reminded that he is gone & i dont have this life really. Taking him back and leaving him again was devastating. The last time id ever see/feel/smell/kiss/cuddle him. It was so Hard to physically take those steps walking away again. Yet another heartbreaking moment.
Aswell as the pain & heartache, weeks later i still felt really unwell. Sick. But, Id never had a baby before so i had no idea what was normal or abnormal. My bestfriend and mum told me to go to drs to be checked to make sure i was ok. I asked to see my gynaecologist as he is a very caring man and i felt comforatable with him. I had a scan done & he rang me on a sunday saying i had retained placenta & needed to have emergency surgery as it was making me very sick. So, the nxt day, 4weeks after birth, i was admitted to the private hospital to have it removed & cleaned out. I felt a sadness that the last remaining part of Jonahs pregnancy would be removed. Crazy but thats what grief does to you.
Following all of this we needed to have so much genetic testing done to try to find a cause/see if this could happen again moving forward for the future. Could i even fall pregnant again? It was already so hard for us & took so long. Thankfully our genetic testing came back all good. Ironically the autopsy results also came back that Jonah’s heart and brain were perfect, so what caused these brain bleeds i will never know, but I am  petrified of pregnancy after loss. I am an anxious, stressed, worried mumma. I am so scarred from my experience. Im scared of sickness and anything happening to my kids. I suffer PTSD and it is so hard. Anxiety about anything happening. I have so much fear in me.
Since Jonah, i have fought so hard & gone through so much. So many IVF cycles, back to back collections, transfers, losses, its been a long hard journey, but i am so blessed to have 3 beautiful rainbow babies. They have literally saved me & are my reason. I am so inlove with them & would do anything for them. They have brought me so much happiness and love i never thought would be possible again, but my heart will always be missing my beautiful Jonah. No amount of time that passes will ever heal that pain and grief. It changes, but it is always there. I wish so much Jonah was here with us, and not a day goes by i dont miss him and wonder what life would be like now.
Loosing my first child robbed me of all that innocent, ignorant pregnancy bliss of being excited every scan. I wish i got that. It took away all those special times. I now fear every scan, hold my breath & pray for good news, good health. Im a different mother because of it.
I dont know how i managed to get through everything i have, but its amazing the strength you find when you’re fighting for what you love & want so much.
If love could have saved you Jonah, you would have lived forever.
I hope i can help anybody who has experienced loss or is in a position similar, that despite my outcome, i know that we had miracles along the way. So, keep fighting! There is light and love after loss (but i totally understand not being able to think that!) Knowledge is power! Health is wealth! Food is medicine & there is so much healing power in food & alternate medicine. Doctors dont always know everything, or get it right. Trust your instinct. Research everything! Fight for what you believe in & dont give up! Dont judge anyone-you never know what someone is going through or what their journey has been.
In honour of my beautiful son Jonah Cruze. Thank you for choosing me to be your mummy & for making me a mum & for sending me our rainbows.
I love u with all of my heart forever & i miss u so so much. Fly high my darling boy. Till we meet again, we love you so so much. Xxx