Pregnancy and Infant Loss Awareness Month: Jade’s story
Posted on
October is Pregnancy and Infant Loss Awareness Month, and Saturday 15 October marks the International Day of Pregnancy and Infant Loss Remembrance.
In Australia, an estimated one in four pregnancies end in miscarriage each year, and approximately 3000 babies die from causes such as stillbirth and SIDS. It’s a shocking, tragic, and heartbreaking statistic.
Honouring the thousands of little lives lost each year, we spoke with local woman Jade Travers about her own story: the grief she felt after losing Ayla Jade, her little girl who was born in December 2021 with limp body wall complex—an incredibly rare condition—and the magic of her new baby a year later.
Can you tell me about your journey with Ayla?
We found out we were pregnant with our second daughter Ayla on 25 September 2021—our Oaklee was only 11 months old at the time and we were a little worried about what we got ourselves into, having two babies so close in age. But we were so excited to watch them grow together and even more so once we found out she was a girl, we loved the idea of Oaklee having a sister so close in age.
My pregnancy was pretty straightforward with nothing concerning showing in the early scans and no unusual symptoms or complications—we also had NIPT testing done, which all came back normal. It wasn’t until our 12-week scan that Ayla’s condition was picked up—I was on my own due to COVID restrictions and the ultrasound tech told me she had picked up multiple abnormalities…Our daughter would have never lived outside the womb, she would have never been able to take a breath and she would have suffered immensely.
We gave her the only thing we could and that was to ease her suffering. I was booked in to be induced on 3 December and Ayla was born at 2:40 am on 4 December. She was so beautiful and so perfect and looked just like our first daughter Oaklee. The pain of losing her was almost unbearable but the support we received from Canberra Hospital and the wonderful midwives helped to make a terrible situation that little bit better. We received so many keepsakes including hand-knitted clothing, hand and footprints, photos and other special things to take home.
What is limp body wall complex? Had you heard of it before Ayla’s diagnosis?
After some in-depth testing and a full autopsy, we were told Ayla had limp body wall complex—an incredibly rare condition affecting only 0.3 in 100,000. I had never heard of this condition before and never knew it even existed. There is no known cause of limb body wall complex and nothing you can do to prevent it; I’ve been told it’s just “unlucky”. There is also no survival rate for this condition after birth—it’s considered a condition that is incompatible with life.
A lot of these babies don’t actually make it past conception however Ayla was such a fighter, she just so badly wanted to be here. Ayla had multiple abnormalities with her heart, internal organs, and spine but one of the hardest things for us to hear was her brain was perfectly healthy and functioning as normal—sometimes you have to really stop yourself from thinking too hard about it and worrying if she felt any pain.
Nothing compares to the loss of a child—what bereavement support did you receive and what did you learn in the process?
After we lost Ayla, I took every single bit of help that was offered to me—I didn’t want to fall into a spiral of depression. I had seen it happen to many people before and I didn’t want that for my husband and daughter.
I reached out to Red Nose and started counselling every two weeks with them, it was the best thing I ever did, and it’s helped me so much. I also did group Zoom sessions with other parents where everyone shared their stories and advice. I found such a strong passion for sharing my story and helping others. It’s also so important to me that Ayla is never forgotten and by telling her story and helping others I can keep her legacy alive.
Congratulations on the new baby! Tell me about this new journey.
All I wanted was to be pregnant again and to bring a baby home. It took us a little longer than expected, I had a chemical pregnancy six weeks after losing her and then the following month we fell pregnant with our rainbow baby. I’m now 33 weeks pregnant and he is perfectly healthy.
Pregnancy after loss is extremely hard, you are constantly on edge worrying about something going wrong—I don’t think I’ve been able to enjoy this pregnancy because I’ve been so scared of something happening to him. He is due on Ayla’s birthday which is really special to us, and I believe she sent us this baby.
How does it make you feel to hear the statistics surrounding infant loss in Australia?
When we lost Ayla, I honestly felt so alone and like I was the only person in the world who had ever lost a baby when in reality it’s so common. I reached out and found so many other loss parents, it was so comforting to not feel alone and to know others have walked this road too.
The statistics around pregnancy and infant loss are so high and it saddens me to know just how many other people have had to feel this pain too.
What message would you like to pass along to other parents this Pregnancy and Infant Loss Remembrance Day?
The main thing I would say is you’re not alone and although it may seem that way, there are so many other loss parents out there and sometimes it can be comforting to know that. And most of all be kind to yourself. There is no right or wrong way to grieve the loss of your baby we are all just doing the best we can.
