vsd 4m

[shado]

HI     I have a Grandson Down syndrome with pressure in vsd from 33 to 665 facing heart surgery in Dec. He has no symptoms, sweating regurg or the other common ones.  I am very upset (of course) and the Cardio doc at Riley didn't paint a pretty picture after surgery concerning  what could go wrong,not coming off vent du e to possible flap which no one knows how it will react and just horrible things. I amsure all babies are different but I am upset with the bleak outlook she gave us. He is so active and normal I am beginning to wonder if Riley is the best place to go. He has no blueness around mouth  or nail beds. Is there anything positive I can count on as I have already lost a Grandaughter  wi th PAN at 11 and they couldn't wean her off the vent.  Are all Down kids in trouble with a 4 size vsd. The doc said it is putting a l ot of pressure on the lungs and heart. Please help.

[Marie M Gleason, M.D.]

As you probably know, children with Down syndrome have a very high chance of having congenital heart disease, particularly shunt lesions and holes in the heart.  In patients with Down syndrome the pulmonary arteries can be stiff and this prevents them from exhibiting the typical symptoms that you see in children with significant heart disease.  In fact, this was a problem in the past, when the children seemed fine, but inside their lungs were being damaged.  Ultimately it could be too late to do anything once they developed symptoms or signs of blueness. If the echocardiogram shows the hole to be large and the pressure estimates in the lung are high, then in all likelihood an elective surgical repair is the appropriate course of action.  Your family should speak with the cardiologist at Riley to make sure that you are clear about the driving factors for a surgical intervention.  

[shado]

Big mistake on 1st note. Pressure 33 t o 65. I am just beside myself, forgive me Also, I know Riley is the best hospital as my Grandaughter was there  but unfortunately she passed away at 11 yrs. and I could never say enough about the Dr's there. For a year they did all they could for her but she had PAN and the worse form. I think maybe the Dr we had last week was having a bad day although I called 2 days ago with a question and she hasn't returned it so I am still not happy...

[shado]

Is there any positive hope you can give me.  Heis 9.2# and very active. It is hard for me to see this and then hear nothing positive. Our cardio is on sabbatical and won't be back till Nov

[protea]

Our son does not have Downs but on the website link that I gave you there are many moms whose babies and children do and they might have some input and a lot of support for you.They may even recommend a Dr in the area that you can go to.

[shado]

Thank you for responding. Does your son have Down syndrome and how old is he. The cardiologist didn't give us one positive word.   I know they are not able to see in the future but I am a retired nurse and can't understand the callousness attitude some Dr's have now. The Dr that took care of my Grandaughter  at Riley was an angel but I am very angry with this lady. I will see our cardio Dr here very soon and see what he tells us as he is very compassionate.
Thanks for your reply

[protea]

Hi there
I am sorry for the situation you are in.Our son just had his 3rd heart surgery at Riley and we are very happy with the drs there.Our sons surgeons are Dr Rodefeld and for the cath we have Dr Mark Hoyer.There is a whole team of drs there so maybe you need to consult with another one.I think there is also a Dr Brown there too.

Our son has BAV with AS and Abnormal mitral valve.The drs there took very good care of him.But if you are concerned you can always go for a second opinion.I hear there is a childrens hospital in MI as well.

If it were my son and I was told that I would seek a second opinion for him.

We will be thinking of you and the family.there is a support group on on baby center.com  here is the link to it.you might find some help there too.
http://********.********.com/groups/a5055/babies_and_children_with_heart_problems