Amba Stewart, Sands, blog
Amba Stewart, Mother | 26 June 2017

During June 2017, as part of our 15 babies a day initiative, we will share 15 blogs by 15 people who have been affected by the death of a baby. By doing this we aim to show the sheer number of people who are affected by the tragedy of one baby’s death. Visit our 15 Perspectives webpage to view other blogs in the series.

My name is Amba and when I was 22 years old and pregnant with my first baby, I suffered with severe morning sickness for the first five months but from what I had read that was a good sign that my baby was alive. I had a 16 week cardiac scan because congenital heart defects run in my family and we were told the news that our baby had a heart defect - coarctation of the aorta. To be honest I wasn't that surprised since my brother and sister were both born with the same heart defect and even though my baby brother died after surgery my sister’s surgery was successful so we were hopeful that our baby would be fine.

Throughout my pregnancy I was told our baby was small for dates but the doctors didn't seem too concerned as our baby grew at each growth scan. Having lost my baby brother to the same heart defect it was always at the back of my mind that maybe our baby might not survive surgery and because of this I only bought two items of clothing and we didn’t even buy a pram.

I was 37 weeks when I started getting contractions, I was in labour for 11 hours and I ended up needing a C-section due to baby getting distressed. This is when we all got the shock of our lives, when I say ‘we' I mean the doctors and midwives too. I remember my mum saying “there’s something wrong with baby’s head”.  I really couldn't imagine what could be wrong considering all the scans showed my baby growing and the only abnormality was my baby's heart defect.

The doctors and midwives in the room had never seen a baby born with such a rare defect- which we later found out to be called an encephalocele - where part of the brain protrudes through a hole in the skull he also had cutis aplasia - which means that a section of skin is missing. He was very poorly and was taken straight to Intensive Care.

I remember one of the doctors coming to my bedside while I was still in theatre saying that he was so sorry and that he had never seen a baby with this defect before.

My baby boy was transferred to Great Ormond Street Hospital and he was there for three days and doctors told us the devastating news that there was nothing they could do for our baby boy, as his heart condition needed surgery as soon as possible. But due to his open head defect they were unable to operate. They informed us that they would be taking the line out that was keeping our baby boy alive and that he would die shortly after.

We held our baby boy until he breathed his last breath and with that last breath he took a piece of our heart away. We will always remember and love you, Abdullah.

This was 16 years ago and we are now blessed with six beautiful children ranging from 14 years to 11 months.

15 babies die before, during or shortly after birth every day in the UK. 15 too many. We want to reduce this number, but we need your help. Support our #15babiesaday initiative by donating or fundraising now.