Children's Hospitals - Need help deciding

[csutherland]

I posted a few weeks ago about my niece's unborn baby being diagnosed with Double Outlet Left Ventricle and needing surgery shortly after birth. Through repeated ultrasounds it has been determined that it's actually Double Outlet RIGHT Ventricle, which is not quite so rare, but still quite serious. He is to be delivered 2 wks early and they have 2 options of where to go. One is Children's Mercy in Kans City. They are a little concerned with a possible language (or comprehension) issue with the pediatric cardiologist there, a Dr R. Gowdamarajan. (Not on his part but theirs.) Also, the delivery would be at St Luke's, which is several blocks from Children's Mercy. The 2nd option is Children's Hospital in St Louis. The delivery would take place at Barnes with just a walkway between the two facilities. This surgeon is a female, Dr. Sharkey. St Louis is about an hour longer from their home.

There are some pros & cons to both, but if anyone has any experience with either of the doctors or facilities your input would appreciated. They need to make this decision ASAP, like tonight.

 

[Lynlw]

I can't really give info on either center, altho know a few families that have gone to both places, but don't know the doctors you've mentioned., I would definately ask both surgeons how much experience they have with what surgery the baby wll need. I'm thinking it may be a Rastelli procedure (Justin had that) or Fontan, or some kind of shunt to get the baby big enough for the bigger surgery. IF he needs a Rastelli its kind of tough since there doesn't seem to be alot of kids that have that, so even the doctors with the most experience, probably don't have alot compared to other surgeries. Are the choice of hospitals because of insurance?

 

[catwoman]

Celia:

My niece, who lives in St. Louis, has passed along some very good information to me. But asked that I send it to you off-line, rather than in a public form. I will PM it to you.

 

[Lynlw]

Does your niece live near Kansas City? I know of some moms who started a support group there (Childens), that I haven't heard much about lately, but they used to be pretty active if they are interested, i'll look for their info.