[mommamarci]

I am trying to do some research and find hospitals / facilities that do pediatric heart transplants. Any idea where I could find this? I have tried googling, but it simply brings up the webstie for select hospitals. I would love to find a list by location so I know which states have hospitals. (My family has a lot of changes coming up and we will be moving. Not sure where and we are trying to map out good / bad areas.)

Thanks!

[CPGJA]

Children's Hospital in Boston has a wonderful pediatric cardiology program. (My son is a cardiac patient there. I also went there as a child for my diabetes.) They have a pediatric heart transplant program. If you go on their website, they have information about the program and it says that it has one of the largest programs in the country.

If you need any more info, please let me know.

Chrissy

[devildogwife]

Usually where you'd go for transplant depends on where you're located. We're in the midwest and would go to Saint Louis, but Cameron is ineligible for transplant anyway. With the changes you're referring to, you need to become familiar with the EFMP :

MilitaryHOMEFRONT Detail - U.S. Department of Defense

When you're enrolled in the EFMP (which is mandatory) you will only be sent to certain places. For instance with Cameron, we only would have been stationed where there were all of the specialists he sees. His pedi had to fill out a form telling who he sees, how often and the severity. As you can imagine, the list was very, very long. This is something, IMO, you need to get on right away. It is really important. HTH.

[linda512]

UNOS (United network on organ sharing) has a website and you can search for centers. Here is the link: Transplant Living: Organ Donation and Transplantation Information for Patients

They are also supposed to have statistics on their site. I didn't look that far.

Good luck.

[OrangeTurtle26]

Originally Posted by mommamarci

I am trying to do some research and find hospitals / facilities that do pediatric heart transplants. Any idea where I could find this? I have tried googling, but it simply brings up the webstie for select hospitals. I would love to find a list by location so I know which states have hospitals. (My family has a lot of changes coming up and we will be moving. Not sure where and we are trying to map out good / bad areas.)

Thanks!

Please feel free to email me. My son had a heart transplant at 4 months of age. I know the system up and down. I also know centers to avoid. Boston and St. Louis both have excellent centers. Navigating UNOS is very difficult and you need to inform yourself of your rights!

[HappyTwinsMom]

Seattle Children's Hospital has an amazing cardiac program. My daughter will be undergoing open-heart defect repair surgery next week. I don't know anything about transplants, but will say a prayer that you find the medical care you need and that your little one recovers quickly.

[mommamarci]

Thanks guys for all input. We saw a second pediatric cardiologist today for another opinion. Both doctors agree that Cameron will need a transplant in the next few years. For now, they are closely watching him and waiting for things to get to the point where he is able to go on the transplant list. (From what I understand, he is going downhill, but is not yet bad enough to qualify to go on the list.)

Again, thanks!

[athikers]

I don't have anything to add except that I'm sorry you're going through this and I hope you can find just the right place to get your son the help he needs.

I feel pretty blessed to live 1 hour from my son's collection of neuro docs (just received the tree's worth of paperwork today that I need to fill out for his next pediatric brain injury appointment), 4 hours from his eye docs... and two blocks from the hospital and ER

[Nevada Jen]

Sorry you are going through all this Marci. I don't have any advice but you are in my thoughts.

[crick]

You might pm Suzberg as I know she's done a lot of research in this area for her dd. They are in the Houston area but she did research other Children's Hospitals etc. too.

And just a note that if you ever end up coming to the Children's in CO, you have a place to stay if needed. (although I know the altitude likely takes CO off the list. But just in case!)

[naca]

U.S. News Best Children's Hospitals: Heart & Heart Surgery

I just saw this link on one of my heart groups lately.. I do believe that Boston was #1 for heart & CHOP (PA) was #2.. Riley is down at #29 although reading their stats, I"m not sure why they are so low.

[mommamarci]

Thanks Naca. I will check that out!

[arubagirl]

CHOP is a wonderful place!!! i uase them for DD

[jtinhdg]

Boston Children's (MA), CHOP (PA), CS Mott Children's Hospital (MI), Texan Children's (TX), and Vanderbilt (TN) are among the best. If you are military and need to find one close to an Army base, CHOP or Hopkins might be a good place, as there are many military bases in Maryland/DC/VA. My bio daughter just had her second open-heart surgery this past Aug and I work as a civilian for the Army, so I would be happy to help in any way.

[mommamarci]

It has been a while since I have been on here! We have had a lot going on. Anyway, I wanted to update: we took Cameron to St. Louis Children's for a transplant evaluation in December. They said he is not yet to the point of going on the list. We are supposed to go back annually (or sooner if more symptoms arise.) Once we learn where we are going to be living, I may switch and use a different hospital for the next evaluation so I can get a second opinion.

Thanks for the help and support!