Where do I go for support with fetal CHD diagnosis?

[hubbychu]

Hello,

First time ever using a forum and I'm not sure if this is the right thread! I'm currently 16 weeks and after getting a difficult nuchal result and having CVS we've been told that the wee one is genetically normal but has a coarctation of the aorta.

We've been advised to go ahead for now but there is a chance that the narrowing of the aorta may be so severe that the heart stops developing and either baby will die or we'll be advised to terminate at my next scan (booked for 21 weeks).

We're just having to wait for now and hold onto the hope that baby might make it to term. Then we'll have the fun and games of GOSH and baby heart surgery though the outlook is pretty good if we get that far.

Is anyone else going through this?

What an awful shock for you. As one who had bad news from a scan - although not life-threatening - I can begin to understand how dreadful you must feel.

Hope someone who can help comes along soon.

Dear Hubbychu - this must be a very difficult time for you; I think you are doing the best thing in trying to find out as much as possible about the condition so that you are prepared for all eventualities, and have support from those going through similar.

From what I recall, someone else on MN had similar diagnosis and was advised to go onto Heartline which apparently has a message board if you sign up.

Again, as another person who had bad news from a scan I can also understand how terrible this feels, and what responsibility you take on in trying to do the best for your child. I really hope that all goes well for you.

As numptymum mentioned Heartline is a fantastic source of support and reassurance at this worrying time.
I can relate to fear of losing your baby before birth but found talking to other parents a real lifeline when DS was diagnosed with a heart defect during pregnancy.

It is good to hear of a positive outlook in regards to corrective surgery. My DS had his HS at GOSH age 4 months it is a fantastic hospital and the advances in heart surgery even on tiny babies is amazing.

Good luck for your next scan, I hope it brings good news.

Heartline are brilliant. My dd1 was diagnosed in utero with a heart defect and at 8 weeks old under went two open heart surgeries. Her prognosis was a good one as her heart defect is a common but repairable one.

After a rocky recovery period she is now almost 8 years old and going from strength to strength. Baby Heart surgery is a very stressful time. We had our surgery at the Royal Brompton and I spent three weeks living at the hospital as we lived outside of London. Now almost 8 years later I can remember very vividly some of the time and other parts are just a blur.