downs baby with large vsd

[gracesmumxx]

i have a 12 week old baby 'Grace'. We discovered at birth she has a large VSD and Downs Syndrome. Since birth the VSD has caused her the expected problems ie fed thru NG tube virtually since birth, tires v easily, poor weight gain - as a result of the VSd has also developed Pulminary hypertension. We have been in and out of hospital 5 times with chest infections - each time 7-10 day stays. She has been accepted for surgery at Alder Hey and surgery should be within the next few weeks we have been told. As you can imagine its very scary having not had any experience in these things before and the although hospital staff are v nice it isnt their baby having these problems. Has anyone else on here in or been in this situation.

 

[CarlyP]

No advice hun just wanted to send a

 

[future_numan]

I have no advice for you either but I wish I had..
sending

 

[Marleysgirl]

Hi there,

I can't help personally but there's a new Dad posting over in the Preemie section of B&B whose littl'un has a substantial VSD: https://www.babyandbump.com/premature-babies/653936-please-some-advice-help-info-regarding-heart-problems.html

You might like to chat

 

[Aidedhoney]

Hiya, My son Alex was born with a CHD, i found heart line forum a huge support xx

 

[Caezzybe]

My son has Down Syndrome but has only a small ASD which the consultant thinks will heal on its own. It might help for you to find a Down Syndrome support group in your local area (I'm assuming you're in the North West as you mention Alder Hay). It's really helpful to talk to other parents who are in the same position as you and there will be parents of children who have had heart surgery there.

Also, Downs Heart Group are worth contacting. Penny Green who runs the group is a lovely lady and the information on the website is very good:

https://www.dhg.org.uk/

I hope that all goes well with the surgery and that it happens soon so that your daughter's health improves quickly.

 

[fairywings]

When I was in Alder Hey for 8 months with my son there were so many babies that were in due to heart problems. VSD is very common and the outcome is usually good with surgery. When they have fixed her hole she will likely start to thrive and put on weight (and lose the NG tube). The outlook is good but i know how hard it is to panic and be worried. All I can say is the surgeons and everyone at Alder Hey are great and also good at what they do. I really liked the staff there. Good luck with the operation. xxx