When Ayla was born, no-one knew she had a serious heart defect. Soon after birth, she was diagnosed with total anomalous pulmonary venous drainage (TAPVD) and she tragically passed away when she was two days old. Her mum, Nicole, bravely shares their story:
Ayla was our first child and, up until the point she was born, we never imagined anything was wrong. She passed all of her scans. This included her anomaly scan and a further private scan.
We were induced at 37 weeks because doctors discovered Ayla wasn’t growing correctly. She was born weighing only 4lb 1oz and rushed to the NICU (for what we assumed was because she was small).
Four hours later, Ayla’s neonatal consultant came and informed us that she had a congenital heart defect. At four hours old, she and I were blue lighted to a bigger hospital, with my partner following behind in the car. We were told to contact our own parents and ask them to visit; we knew it was serious.
Upon arrival, Ayla was diagnosed with infra-cardiac total anomalous pulmonary venous drainage (TAPVD). Her TAPVD was obstructive and this meant that, due to her defect, her pulmonary artery dropped below her diaphragm and joined back into her ductus venosus (the shunt that is active in the womb but closes after birth). Every time she tried to take a breath, the blood couldn’t completely get through and would back up into her lungs. When the ductus venosus closed a few days after birth, Ayla would no longer receive oxygenated blood, so it became a race against time.
Due to her small size, doctors couldn’t perform the surgery required to save her life. They tried pioneering surgery to stent the closing ductus venosus but weren’t able to. Ayla passed away at two days old.
I feel that if we had had an early diagnosis we would have been prepared. We had no idea that this could exist, particularly after clear scans. We have spent months trying to navigate the shock alongside the overwhelming grief. If we had had an early diagnosis, we would have had time to come to terms with Ayla’s diagnosis and prepare for what was to come.
Although we are thankful for the care we received, we are hopeful that eventually all heart defects can be diagnosed before birth, so parents do not have to go through the shock of finding out their healthy baby has a heart defect hours after birth.
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