Cooper was diagnosed with Total Anomalous Pulmonary Venous Connection (TAPVC) a few weeks after his birth. His mum, Elena, shares their story:
Cooper was 20 days old when he became unwell. We had the best couple of weeks at home becoming a family of three and hadn’t suspected he was unwell at all.
On the day we took him to hospital, he wasn’t quite himself. Quieter, more sleepy and bringing up a few of his feeds. The last thing we thought might be wrong was a heart defect.
We had opted to use a baby monitor, and some of the features of it were that it tracked heart rate and oxygen saturations. It was when we were getting ready for bed and we attached the monitor to Cooper’s foot, we really suspected something was seriously wrong. The monitor immediately began alarming that his oxygen levels were at 67%.
I called my midwife and she advised us to call 111, which then led us to our local pediatric A&E. We were seen very quickly and it was determined that Cooper may have a cardiac issue, but this could not be confirmed there.
Throughout the night, Cooper’s condition rapidly deteriorated. He had an oxygen mask, Opti flow and CPAP to try to improve his oxygen saturations, but was eventually intubated.
The Children’s Acute Transport Service took us by ambulance to Great Ormond Street Hospital and within 30 minutes of being there, Cooper was diagnosed with Total Anomalous Pulmonary Venous Connection (TAPVC). He had surgery to correct the heart defect that same day.
It was the scariest 24 hours of our lives and we are very lucky for a happy ending. Cooper is now 21 months old, thriving and the cheekiest little boy.
I’m not sure if Cooper’s heart defect could have been detected earlier, as his body did such a good job at compensating, but oxygen saturation monitors being more readily available and also education on the symptoms to look out for would help massively in the earlier detection of heart defects.
Find out more about Test for Tommy, our campaign to place pulse oximetry machines in maternity units across the UK, here.