Looking for specialty doc

[littleclover]

I have a friend who is need of any referrals for a doctor/hospital that specializes or has any experience in working with an infant with PHACES and Internal hemangiomas. I really don't know a lot of details except I know this infant of less than a year old has already had couple of surgeries, one to close two holes in her heart.

The doctors my friend is dealing with are doing their best but they have never had this kind of case in their hospital. She and her husband are now looking out of state to search for more expertise so ANY insights on children's hospitals would be appreciated.

I don't have much more info but to pass on any names of hospitals to my friend would be great for their research. I am absolutely sure the hospital doctors are also reaching out but the more options the better.

I have to sign off right now but will check back later. THANKS!!!!!!!

 

[ilovepcot]

Seems to me the surgeons who performed the procedures on this child would have the resources at hand to do a search and find a specialist if one exists. Hopefully one is found and very, very soon.

 

[mandy200587]

Just asked my sister who's a nurse here in TN and Vanderbuilt Children's Hospital does work with this.

 

[ilovepcot]

Here is a bulletin board dedicated to this. Hope it's helpful.

http://www.birthmark.org/hemangiomas.php