vetricular septal defect

[Izzie74]

So my 20 week scan did not go quite as I hoped and I am back in today to see a specialist as the baby has a suspected vetricular septal defect (hole in the heart).

Has anyone else experienced this?

Have so many questions to ask today.

Prayers please x

 

[Izzie74]

Baby has VSD and parallel outflow tracts. Will need open heart surgery within days of birth. Seeing cardiologist on Monday.

 

[going_crazy]

Hey, my daughter was born with several heart defects, a vsd being one of them.... She also had TGA (transposition of the great arteries) which sounds similar to parallel outflow tracts???

My LO had surgery at 2 days old, 4 days old and 15months old. Feel free to ask any questions, and I'll help where I can

What hospital are you under for the cardiology?

Thinking of you xx

 

[Izzie74]

Hey, my daughter was born with several heart defects, a vsd being one of them.... She also had TGA (transposition of the great arteries) which sounds similar to parallel outflow tracts???

My LO had surgery at 2 days old, 4 days old and 15months old. Feel free to ask any questions, and I'll help where I can

What hospital are you under for the cardiology?

Thinking of you xx

Thanks for your reply.

Yes it is VSD and TGA. We are seeing the cardiologist on Monday at Queen Charlotte's Hammersmith. Operations will be at Royal Brompton. We will have a tour of the facility and meet support groups. How is your DD now? Waiting to ask lots of questions tomorrow. Feeling overwhelmed, but knowledge is power and the more I find out, the more I feel better about it.

 

[going_crazy]

My DD is doing brilliantly thank you.... She's 'normal' and keeps up with her peers at nursery. She will need further surgery, but that's because she had Pulmonary Stenosis and needed her pulmonary artery replaced with a homograft (trying to put it simply - lol)

Definitely ask lots of questions - there is no question too small. Write it down so you don't forget anything. I think you should get a cardiac liason nurse (or similar) that you can contact with any concerns or questions you have.

My DD wasn't diagnosed until she was 1 day old, so can't help with anything ante natal I'm afraid. Are you on Facebook? If so there is a group called Patches Heart Group, and there is a 'members' section where there is a tonne of support.

I've heard fantastic things about The Brompton - their care is top notch We are seen at The Evelina

Thinking of you xx

 

[DaisyMai]

Hey hun,

Sorry I can't offer any advice but sending you a hug..

I do understand the worry and emotions though as our son was born with a serious metabolic disorder that will be with him for life.

If you just fancy a chat I'm here

 

[midori1999]

My son was born with Downs Syndrome and a VSD. We were told initially by the paediatrician that it might close by itself and wouldn't cause a problem, but at a 'routine' specialist appointment when he was 6 months old, we were asked to come back the next day for open heart surgery the following day. It had been causing him huge problems, including failure to thrive, but no one had picked up it was his heart.

He is now 9 1/2 and doing great. He sailed through the surgery (I think it's much worse for parents, he had morphine for one day then just calpol and was out of intensive care after 5 days, out of hospital in 6 days. He has yearly check ups, but is fine.

 

[going_crazy]

Hi hun, just wondered how the cardi appointment went? xx

 

[Siyren]

Hope the cardiac assessment went ok- my daughter has absent pulmonary valve syndrome and is with Gosh for that x

 

[Izzie74]

No it went terribly. The list of complex heart conditions went on and on and on. Basically my baby was dying. I delivered at 21+6. May he rest in peace.

 

[Blondie007]

I'm so sorry for your loss xxx

 

[steph.]

I'm so sorry to hear about your baby boy Izzie. What a heartbreaking thing to go through. Fly high little angel xxxx

 

[going_crazy]

I'm so sorry for your loss. I hope you find some strength during these hard times. May your little boy rest in peace xx

 

[Siyren]

I'm so, so sorry Hun x