My baby has heart PDA that requires surgery

[Beastlybeautiful]

My 4 month DS has a heart defect called a PDA which means a vessel near his heart has a hole that is pumping too much blood into his lungs. A consultant from great ormand street said the hole is too big and will require surgery in a few weeks as he has breathing issues and is under respiratory distress. IM SO SCARED and any advice would be appreciated. He is currently being NG fed. We've been in hospital for weeks so honestly it's been a really tough journey to motherhood.

Hi OP,

Sorry you're going through this. My daughter was born at 24 weeks and had a pda that didn't close.

Hers wasn't large enough to need surgery whilst she was in the NICU, but quite a few did. All of those surgeries I was aware of (as you know the parents talk) were auccessful. In some cases extra respiratory support was temporarily required post recovery.

My daughter did eventually have her pda closed at GOSH in December shortly after she turned 3. I was dreading it. But touch the operation went really well and she recovered quickly. It's a good team at GOSH, I know it's horrible but you're in good hands.

Hi,

Thank you for your reply. My baby also aspirated milk into his lung and has respiratory issues due to that and the pda so it's been quite difficult. I can't imagine how hard it must have been to have a 24 weeker. I'm glad she's okay now x

Hello,
My 3 month old daughter has a large PDA and is due to have open heart surgery in a few weeks time. I was wondering if your DS has had the operation? It would be great to know your experience if you were willing to share. In particularly, how he coped post surgery and how long recovery was? It really is a tough start to motherhood!

Hi,
Thank you so much for your message — it really means a lot. My little one had a catheter procedure , and he still has a feeding tube because of severe reflux, so I completely understand how tough this journey can be. It’s incredibly hard watching them go through so much at such a young age.

You’re doing amazingly — stay strong, and just take it one day at a time. These little ones are tougher than we think, even when things feel overwhelming. Sending love and strength to you and your baby ❤️ x

My dd had this, hers was fixed by keyhole surgery at 8 1/2 months, she was back to her normal self in days and is now a very healthy 18 year old.

@Beastlybeautiful slightly off topic. Re the reflux hang in there, it should slowly improve. My daughter had terrible reflux which would trigger Bradys and desats. Later when no longer ng fed, insane projectile vomit. Slowly but surely things improved! These babies are something else 💕.

I’m hopeful his one will improve too. Did you find your daughter caught colds and chest infections more often?

Have you had a look on the British Heart Foundation website OP? There may be support groups you can access and advice.

Hi @Beastlybeautiful, yes I hope so too.

Yes my daughter was very prone to colds and chest infections in the first 2 years and did need admitting to hospital for support. We were advised it was likely due to the Chrinic Lung Disease (due to extreme prematurity and under developed lungs which she has slowly grown out of) and the PDA (due to the blood being pushed into lungs), not the reflux.

Essentially every time she caught the most minor illness/cold that an average child would throw off she would develop an aggressive cough and upper respiratory tract infection that lingered. It was ridiculous at one point and it was thought that she had asthma and was given inhalers.

Touch wood things have really improved since the PDA has been closed.