Please help - pulmonary artresia

[Clarabell78]

My baby has just been diagnosed with this at 20 wk scan and I would love to hear from anyone else who has been through this. We are shattered at the moment and in total shock. Just need some support please.

Hi Clarabell78,
I'm so sorry. How worrying for you. I have no experience of pulmonary artresia, but I do have experience of having a dc with a very significant medical condition. And I feel for you. It is so worrying and shocking and it takes time to aclimatise to the new information. But you CAN cope, and CAN deal with this..... the shock does pass and then, even though the worries don't disappear, you can cope and get through this.
My only advice is to try to make sure you speak to the real medical experts who deal with the condition every day. Dealing with a medical professional who really knows this issue and has seen it many times before can be reassuring even if they aren't giving you the news you want to hear.
Also, although dr google is generally best to be avoided, I would keep searching for other parents who have had this diagnosis. I am part of an email support group for parents of children with my ds's illness and it has been a huge support. This is what you are asking for in your post, but if you don't get any good responses from MN then keep searching for other parents (can the drs/hospital put you in touch with any?) as I found it very helpful.
Really hope things get better for you.

Hi Clara -congratulations on your pregnancy. I'm sorry you've had difficult news about your baby's heart.

My dd (now 18) has a complex heart problem. She wasn't diagnosed in utero so I can only sympathise with how you're feeling right now. There are two main places I usually direct parents to and they are Little Hearts Matter a charity that helps parents who have children with single ventricle defects, they have a helpline and a discussion board. The helpline staff can help you directly with any questions you might have. The other is Heartline again they have quite a busy message board with a specific pregnancy section. I check in on Heartline most days. Both can find you parents who have direct experience of pulmonary atresia either via their message boards or by more peronal contact - email/telephone. By their nature though they are parents who have continued with their pregnancies and particularly on the boards parents who may have had a difficult time so take on board that the journey is not the same for everyone; it's the bad times that are often most shared. Don't necessarily be disheartened by the stories your read on the internet.

My own dd had a very difficult start but despite a poor prognosis has done incredibly well and continues to do so.

Have you spoken to a fetal cardiologist yet or are you waiting for a further referral?