[rnsusan]

Does anyone know an adult GI doc that takes care of adult patients with SBS related to NEC early in life? Where do your peds GI docs refer there patients to when they reach adulthood?

[janfrn]

There probably aren't many adult GI specialists caring for NEC survivors yet. The numbers of NEC survivors who are adults aren't very large, so the need is only just being felt. Until about two decades ago, babies with NEC who required resection of large portions of their small bowel usually didn't survive for long. We could liken this situation to that of adults with congenital heart disease. The oldest survivors of complex cardiac surgery in infancy are in their 30's now.

Transitioning will probably be on a individual basis for the time being. The pediatric GI specialist will have to do a search for someone to pass their patients on to, someone with an interest in NEC survival or someone who has found themselves already caring for them.

[rnsusan]

I know that it is going to be very difficult. The peds GI office is not being helpful at this point.

I personally know how difficult it is to find an adult cardiologist that is trained in adult congenital heart disease. In the US there are over a million adults that were born with CHD. I also know multiple TGAs in there 40s, a couple HLHS adults in there 20s and TOFs in there 50s and 60s. In many states adults must see peds cardios.

The only problem is that I can not find a peds GI that is willing to see her within a days drive. The peds GI won't see her and the adult GIs have no experience.

I also know adults with spina bifida and severe CP that are having difficulty finding health care as an adult. There was this huge medical team for us as a child and now that we have grown up there is limited care.

[janfrn]

I agree, this is a huge problem. Care for medically complex children has really grown along with the needs of that population but they're seemingly abaondoned when they turn 18. It's like nobody thought beyond the immediate and realized that these kids ARE going to grow up, because they have cutting-edge medical care as kids. I think the answer is going to have to come from the parents being vocal about the problem and getting the attention of the public as well as the medical profession.

My son, who is now 25, has a corrected TGA and has also had a hematologic disorder, a liver transplant and multiple CVAs. Finding appropriate care for him is a chore and a half in more ways than one since his CVAs left him developmentally delayed. So he doesn't quite fit in either world. His cardiologist is someone who has specialized in adults with congential hearts, so that's okay. He sees a hepatologist who only works with adults, and I have a lot of trouble getting any information about his labs and so on. As his legal guardian I'm entitled to the information, but they "don't usually give information to patients' mothers". He has severe spasticity on one side and would really benefit from a tendon release of his hamstring, but there are no orthopedic surgeons willing to do one on an adult. I'm tempted to take him back to the city where we used to live and get his pediatric orthopod to do it. That would be a Band-Aid fix though. Something more far-reaching needs to be done. If only I had the energy!