Their diagnosis of HPE (holoprosencephaly) has been changed to ASP (absent septum pellucidum) possibly resulting from SOD (septo-optic displasia). Although ASP/SOD still could present some of the same developmental issues as less extreme cases of HPE, the new diagnosis is a better one overall. (In fact, I understand that ASP/SOD used to be listed as a mild form of HPE.)
We're glad for the new diagnosis, and especially thankful to its source, the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations. We took the initiative to contact the nearest location of the Carter Centers (located in the Texas Scottish Rite Hospital for Children in Dallas) after the boys were dismissed from Harris Methodist. We sent over the boys' MRIs, and we were told that the Carter Centers couldn't help us because the boys don't actually have HPE. But that's a good thing -- with their rejection came a very detailed and helpful explanation of WHY they couldn't help us and why they don't have HPE. We've since been able to take that explanation to other doctors.
A couple of things we've learned about doctors and hospitals:
1) NEVER assume anyone is communicating with anyone else. Maybe they are, maybe not. Our first meeting with our neurosurgeon is a good example of that. (That story was pre-blog, so maybe I'll have to revisit it.)
2) A single doctor's diagnosis can have a lot of inertia and may rarely get challenged. The HPE diagnosis, which occurred in the NICU, had enough momentum to carry it along to every other specialist we've seen. Until, that is, the Carter Centers' diagnosis became the outside force that acted on the thing in motion. Challenge assumptions.
3) You are your best (and sometimes only) advocate. Do your own research. Join an online community/forum. Get second opinions. If your doctor doesn't specialize in your or your child's condition, find one who does.
So over the last few weeks, we've had our fair share of visits to/from healthcare professionals, including the neurosurgeon, the neurologist, the early intervention specialist, the occupational therapist, the geneticist, the pediatrician, the butcher, the baker, and the candlestick maker. (Some of these visits were scheduled, but one wasn't -- We had a little scare one day that John-Raven's shunt was failing, but thankfully, it was a false alarm.)
The boys have an improved diagnosis, they're putting on weight, they're happy (er, most of the time), and they're still cute little stinkers.
Speaking of cuteness...without further delay, I bring you CUTE BABY PICS.
Shirts read: MY MOM RULES and MY DAD IS RAD.
(Thanks, Deneise!)
