Pulmonary Atresia: Harry’s Story

Harry’s heart condition, pulmonary atresia, wasn’t detected until after his birth. HIs mum, Charlotte, shares their story:

Harry was born with pulmonary atresia. Throughout my pregnancy, I wasn’t aware anything was wrong.

I had two weekly check ups, as Harry’s weight was so up and down, but still nothing was picked up about his heart.

I was induced early, as Harry was showing big. He was born on the 5th December 2020.

On the 6th December, Harry had the routine checks and the nurse could hear a slight heart murmur.

Our lives were turned upside down… Harrys oxygen level was 30 % – almost nothing!

Harry was airlifted on his own to another hospital, while his dad and I had to drive to meet him there. We stayed at the hospital until the 15th January.

On the 7th December, when Harry was three days old, he had his first heart surgery. It was successful… for now…
Harry’s valve in his right ventricle was completely closed, so no blood could get through. His ventricle built lots of muscle and was causing problems.

Harry had medication to help slow his heart and see if the muscle would stop growing. The medication also kept his duct open, so he could breath.

This took weeks, but it didn’t work, so Harry had his second heart operation at five weeks old. He had a stent put in the duct, so a week later he finally come home and meet his big brother, Jacob, and all his family.

With all the medication, tube feeding and checking his heart rate, weight and oxygen, I was excited but so anxious that Harry was now in our care. We were so scared to bring him home. I couldn’t sleep, constantly checking him. However,
things were great and we loved having him home. We were very busy with all his check-ups and nervous about COVID.

Then, by April things started to change… His oxygen kept dipping and I was back and forth to the hospital every week.

It was time for Harry to have yet another heart surgery to open this valve. This time it was unsuccessful, and the doctor told us Harry needed open heart surgery. After all the catheter operations, we weren’t prepared for open heart.
It was awful to see him go through this but, like a warrior, he pulled through. They removed some muscle in the right ventricle and reconstructed his valve. They also closed his stent.

Eight days later he come home and has been absolutely amazing since. He’s such a happy little man and we’re so proud of him. He’s been through so much in such a short space of time.

Harry is nearly walking now, and he’s got such a lovely personality – always laughing and loves dancing to ‘Wheels on the Bus’. To look at him, you would never know he’s got a heart condition.

We had another check up for Harry and his valve is now closing again. We were devastated to be told he needs more surgery.

I’d like to thank all the hospital staff for everything they’ve done for Harry and our family. We wouldn’t be here today without them all.

Find out more about pulmonary atresia here.