Hi
I’m currently 21 weeks pregnant with my third child who was diagnosed with pulmonary atresia with vsd yesterday. As you can imagine I am in pieces and have no idea how to even start processing all of this
They said he’ll be taken to nicu straight after birth and then transferred to GOSH before he’s 10 days old. He’ll need more surgery before he’s 6 months old but after that there isn’t any predicting how many he’ll need.
So just thought I would say hi 🤚
Hi and really sorry to hear that, I can't imagine how how you must feel,love and hugs ♥ char xx
Hi there - I'm so sorry to hear about your little boy. There is an absolutely wonderful team at GOSH and if you need to speak to one of their specialist nurses there so they can explain things to you a little more then you can give them a call.
We have a booklet on pulmonary atresia with VSD if that's useful for you: bhf.org.uk/publications/chi... which you can download or order a hard copy for free.
There are also a couple of Facebook groups some of our parents of children with heart conditions have said helped them, which you can find here: facebook.com/HeartlineUK/
facebook.com/littleheartsma...
facebook.com/chfed/?hc_ref=...
I hope this helps, but please feel free to reply with any more questions you have or give our helpline a call on 0300 330 3311.
Take care, Chris
That must be really hard to cope with, I'm so sorry you're having to go through it. On the upside, it's fantastic that it has been picked up so you know the very best care will be in place as soon as he arrives. Chris's suggestion of phoning GOSH sounds good to me - the more information you can get, the better. I'm sure the staff there are used to helping parents process/plan and will help you to feel more comfortable and confident with everything that lies ahead. Sending very best wishes to you and your family, do keep us posted x
So sorry to hear this, sending you love and hugs xxx💕
My heart goes out to you. Your little one is a precious gift, I'm sure he'll get the best care. Best wishes and keep positive. Xx
Hi, our little girl has Pulmonary atresia, avsd and small branch arteries. She had her first surgery at 6 days old, she is under GOSH too. She’s almost 2 now, she’s been through a lot but she’s so happy and although isn’t quite walking yet she is very active and very chatty.
I know what you are going through, and the journey is a tough one, I won’t lie, you have to be strong for your baby, but it’s so worth it all, it’ll make you stronger as a person and it’ll make you appreciate everything so much more.
Hugs to you. If you can visit GOSH before you are there then that might be Helpful. If you need any help or advice then please get in touch. Lots of love x
Post op timescale for carer
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