Mum shares her heartbreaking experience after discovering her baby girl was terminally ill and their best option would be to terminate.
*TRIGGER WARNING some readers may find this story distressing.
Caitlin shared her heartbreaking story with Mouths of Mums to raise awareness and hopefully prevent other families ever going through her horrifying experience.
“On the 26th of September my husband and I attended Sutherland Hospital to have a very routine morphology scan, otherwise known as the ’20 week scan’. The scan went as you could expect, the technician pointing out all the parts of bub and making comments like ‘oh look she’s waving at you’.
At the end of the scan she left the room to check with the doctors that she has enough pictures. She returned 15min later and stated that ‘there is a lump on bub’s spine. Thinking nothing much of it, we were taken upstairs to see an obstetrician. We were informed there was an abnormality; however they would not give it a name. We were told we would need a follow up ultrasound and to see the specialist team at the Royal Women’s Hospital.
Three excruciating days later, we had the specialist scan and appointment. “Your baby is extremely unwell. It is the worst case of Spina Bifida we have seen. We recommend termination”.
Nothing can prepare you for those words. Our beautiful baby girl had a lesion from T10 which is extremely high up the spinal cord. She also had Arnold Chiari Malformation which affects the cerebellum in the brain.
My husband and I chose to let our baby girl go. A decision made purely out of love. Medical terminations are a taboo topic. I sought support in online loss groups and had reactions such as “you murdered your baby” and “what a slap in God’s face”.
Families should not be faced with these reactions. The decisions that are made are in fact selfless and heartbreaking.
In Australia if you require a termination over 20 weeks pregnant, it needs to be approved by an ethics committee. It is also recommended that you give birth rather than have surgery.
On the 5 th of October I was admitted into St George Public Hospital in Sydney where I had to wait in a room with my husband whilst they could find a room for us. I was told there was no room for me on the Gynaecology ward, so I was placed in a single room on the maternity ward. Not only was the
room in the centre of the maternity ward where I was surrounded by new Mum’s and their babies, our room was covered in posters displaying how to breastfeed and how to take care of your newborn.
Whilst my husband was allowed to stay with me, he had to sleep on a tiny fold out chair in the corner of the room which was very uncomfortable for someone who is 6”4!
The long process began
My induction began and I was administered the first lot of medications. I was told the whole process would not take longer than 48 hours. Every 4 hours I was administered medication which was a painful process. The next day was the same, and with no progress I was mentally and physically exhausted. I was allowed home the next night but had to return to hospital on the Saturday to continue the process. Again, more medications were administered every 4 hours with no progress.
On the Sunday I was transferred to the delivery room and had a balloon catheter inserted which was a very painful procedure. I was taken back to my room on the maternity ward for the night. Monday came and I was only 2cm dilated. My waters were broken and a drip was started 6 hours later as I
was still not progressing. At 8pm that night, my waters needed to be broken again.
Baby Layla was born
Finally, at 9.34pm on the 10 th of October, at 21 weeks and 6 days pregnant, our beautiful little girl Layla Jade entered the world weighing a tiny 390g. Miraculously she was alive for 2 hours.
That night we stayed in the delivery room and by 2am I was begging the staff to let me go home.
Listening to babies being born around me was overwhelming and cruel.
Finally on the 12th of October I was discharged. Walking out of the ward with empty arms, through the same door other women were taking their beautiful babies home was unfair.
Stuck in a maternity ward grieving for her baby
After travelling to Victoria to be with family that Friday, I experienced a secondary post-partum haemorrhage from retained placenta and was rushed into emergency surgery. I was then placed on a maternity ward for a further 2 nights. I was alone and grieving the loss of my daughter while once
again, surrounded by posters of babies and listening to the cries of newborns.
This system needs to change. It is simply not good enough.
Grieving parents should not have to be exposed to new babies and their families, while trying to grieve their own. After speaking to other mums who have gone through losses, it is a similar story.
I have had a few women who had a beautiful experience in some hospitals however. They were given their own private room where they could not hear any other babies. They were given a double bed so they could sleep with their partner and the room was decorated sensitively. A purple butterfly was also placed on their door so staff were aware of the situation.
System needs changing now!
This should be standard procedure across the board. If a hospital is unable to provide these services, the women should be referred on to a hospital which can.
On the 21 st of February of this year, I gave birth to a healthy baby boy in the same hospital. While my experience was very different this time, the pain and trauma from my previous experience was with me the whole time and prevented me from having the birth I wanted.
I want to raise awareness and I want to educate the hospitals about what we go through and what they can do to improve the heartbreaking experiences women have to go through. I will continue to share my story so that other women know they are not alone.”
We want to sincerely thank Caitlin for sharing her touching story with us.
If you or someone you love are suffering the loss of an infant please reach out -
Bears Of Hope Pregnancy & Infant Loss Support
Grief Support: 1300 11 HOPE
PANDA National Helpline (Mon to Fri, 9am – 7.30pm AEST) Call 1300 726 306
24 hours a day, 365 days a year (including Christmas Day) by dialling 1300 072 637
Lifeline 13 11 14
Our thoughts are with all those families struggling with the recent loss of their tiny little angel.
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