My Baby Needs Open Heart Surgery

[DeloresAmelia]

I was looking to see if anyone had any similar experiences to me. I just gave birth five days ago and my baby has been diagnosed with a heart condition. Tetralogy of Fallot. His condition is really severe and he’ll need to be put on prostin and have open heart surgery in 5-6 weeks once he has gained weight.

I am absolutely terrified and my mind is going to dark places. I can’t bare the thought of losing him

Keep visualisating your baby healthy and happy OP. see him/her at some point in the future (in your mind’s eye) having had and benefitted from the surgery. Don’t allow the darkness in. Trust.

I can't imagine what you're going through. I don't have any advice but the advice above is good. Sending you and your precious baby my thoughts and absolute best wishes 💖

It's the scariest thing possible and I hope you're coping somewhat ok. Have you contacted heart uk, they are so good and you probably need counseling.

I was very lucky that our dextrocardia baby ended up with all the wiring in the correct place, but we were being prepped for the alternative and it's hugely scary.

I’m so sorry you are going through this. Let me give you hope. My granddaughter had a congenital heart defect that was picked up during pregnancy. She had to be born at St Thomas Hospital and was immediately put on prostin or she wouldn’t have survived. At one week she h defer to open heart surgery. It was the scariest time of our lives but she pulled through and was out of hospital after a further 3 weeks. She is 19 months old (today) and she is thriving!!! She was walking at 9.5 months and she is just full of energy and fun. Her scar has faded so much too.
this will be an incredibly scary time for you - we got through it because you just do but when I look back I remember just how traumatising it was. But your little one will be in the safest hands and they will look after him. They truly are amazing and your little one and you will get through this xxx

My best friends little boy has a heart defect; he has had heart surgery a few times in his few short years but not as young. Although she’s got friends from an online support group who have had babies only weeks old (and no bad news stories that she’s shared anyway, all positive outcomes). It’s a support group linked to the hospital. Which hospital will your baby be at OP? xxx

Im sorry to hear that, it must be really stressful for you.
I had open heart surgery as a baby which also included a collapsed lung. 30 years later, I am fine and have a newborn of my own. Medicine and surgery is much more advanced since then too. Keep your trust in those doctors, thinking of you x

Thank you all for the kind replies. I’ll definitely get in touch with Heart Uk. I’ve barely slept and not been home since I went into labour on Monday night. I’m I’m dreading going home seeing the Moses basket and pram. The doctors were all so positive about him getting home soon as he’s doing amazing. Then yesterday the head consultant had a chat with us and said that wasn’t going to happen and his heart is more complicated than they thought and he will deteriorate. We just have to wait and see before we start the Medicine. There were another two options, that would mean the surgery could wait a little longer but his heart is in such a mess they wouldn’t work.

I’m so scared the medicine won’t work and also that’s he’s too small for the surgery. I’m trying to read others peoples stories about newborns having open heart surgery but can’t really come across many. Don’t want to google too much.

Ah no this is bad for you to have to go through I'm so sorry. It will probably/hopefully all be absolutely fine but you don't know that yet!!

Hi @DeloresAmelia , I hope you and your baby are doing okay today. I just read your post and felt I should reply. I have a baby who was born with a severe case of Tetralogy of Fallot. I found out when I was pregnant so the shock of it had worn off by the time they were born and there was already a plan in place for the birth and afterwards. I still remember how overwhelmed and anxious I felt though. It was scary.

My baby was put on prostin straight after birth and had a sent fitted before they could come home. They had the repair surgery at 4 months old and since then they have done really well. If you want to ask any questions or just vent feel free to message me. I don't want to bombard you with too much information as I am not sure if that will be helpful.

I really wish you and your baby all the best and just remember that you can and you will through this.