Alternative for UBAVC and HLHS

[Guest guest]

From Another List.....

Kristy

I received the following message from the mom of a young boy with Ds who had

an unbalanced AV canal heart defect that was repaired last year. The surgery

that Gabe had is relatively new, and many people may not have heard of it,

so please pass this information on(in unbalanced AV canal, one side of the

heart is much smaller than the other. ..the usual treatment is a Fontan

procedure, which does not repair the heart defect all the way, and life

expectancy is not very long as a result. Dr. del Nido in Boston has

pioneered a technique that allows the underdeveloped ventricle to grow,

which results in a more 'normal' heart)

Here is the information from Debbie:

The Fontan is a palliative repair. Eventually it is expected that the heart

would fail, as it was not meant to operate on 2 chambers. Many kids live

into their teens or even 20's before needing a transplant. However, in

children with DS, they very rarely live beyond age 7.

DS kids' lung's tend to be tighter. They develop Pulmonary hypertension

easier, many are already born with it. They do not do well with the Fontan

and most are not candidates for transplant. I only know of one child wih DS

who received and survived a transplant.

ANY child, DS or not, who has UBAVC or HLHS should absolutely seek multiple

opinions at top centers to see if their child is a candidate for a full

repair. Dr. Pedro del Nido of Boston Children's hosp is leading the way with

doing the 'growth' procedure on kids with HLHS. He is also about to present

his findings at the next big conference on the importance of performing the

bi-ventricle repair on DS kids.

If you ever run across another child with Down Syndrome with

UBAVC(unbalanced AV canal), or even HLHS(hypoplastic left heart syndrome),

please send them my way. It would be an honor to help them. And if you know

of any about to have the Fontan....call me immediately! Doctors at. Boston

and a couple other hospitals said they would avoid the Fontan of DS kids at

almost all costs.

Debbie ston (Gabe's mom)(email address at Caring Bridge

link.www.caringbrid ge.org/ny/ gabrieldavid