Miracle Baby

"Lego" was diagnosed this week with some very long words. He has Semi-Lobar Holoprosencephaly (HPE), Pachygyria, and an interhemispheric cyst. It is actually amazing that he is with us at all with all of these complications. HPE is a condition where the normal divison of the two hemispheres of the brain did not take place during his early fetal development. His is classified as "Semi-Lobar" because parts of the brain are divided, but most is still joined. This means that parts of the "middle" of the brain did not form. I found the following statistics about HPE on another mom's blog -

Lego's condition occurs about 1 in 20,000 out of every birth. (0.00005)

1 in 200 make it through full-term pregnancy alive. (0.005)

Less than 2% of those survive through the trauma of birth to their first breath. (0.02)

Less than 1% of those that survive come out without health complications, which will allow them to live during their short hospital stay. (0.01)

Total odds = (0.0000000005) or a 1 : 20,000,000,000 chance.

Even those who make it home rarely live past 6 months. For Lego to have survived his first 6 months all alone in hospital, and now be nearing 9 months is truly miraculous!

He is also blessed because he does not have many of the health complications that can be associated with this illness, and is able to eat VERY well on his own. Many of the kids with HPE require feeding tubes.

One big worry with the HPE and Pachygyria (all I know about this one so far is that it means he has a smooth brain, rather than the sponge-like one you see on ER, and that it's not good) are both associated with seizures and epilepsy, so we will be keeping out eyes out for this in the future. There is still a big concern that he will have a shortened life span because of all these things, but kids are always proving doctors wrong, and some kids with HPE have lived into their teens or 20s! So please continue to pray for him.

Pray for us also. It is hard to know how much we should be accepting and how much we should fight. Finally, we are still in discussion about whether we will be able to keep him permanently, or if we should transfer him to a special needs home. At the moment we are about an even split among the staff as to which option we prefer. I have sent out e-mails asking to set up appointments at the 2 homes that were recommended by our pediatrician. So we are waiting on that, and also on finding a good neurologist to examine him properly, and to determine whether we need to shunt or drain the cyst, or just leave it alone.

On a happier note - the adorable little jersey and hat (and booties, not pictured) are an outfit that was made especially for Lego by an older lady at our church. LOVE them! He looks like a little marshmallow! He even smiled when we put his hat on. With Jester's help I was finally able to capture his adorable smile on camera!