Stem Cells, Weird Smells, and Fussy Spells

This week has been a big one for Claire. On Tuesday, she received a stem cell infusion from Dr. Joanne Kurtzberg. A great explanation of this treatment can be found here.

For those who don't have a chance to click on the link, here is a "cliff notes" version: Stem cells are "undifferentiated," meaning they can become any cell in the body. The blood from a baby's umbelical cord contains millions, or sometimes even billions, of stem cells. During pregnancy, babies continuously receive stem cells as they grow. Once a baby is born and the umbelical cord is cut, they stop receiving them and the stem cells die off if they are not preserved. Dr. Kurtzberg has found that by giving babies back their cord blood at various points in time, the stem cells can help "repair" damaged brain cells in babies with hydrocephalus. Dr. Kurtzberg is currently the only doctor in the world offering this treatment, so we feel very fortunate that she is so close by.

The procedure is relatively simple: It is just an IV. It takes about 10-15 minutes, and since the blood the baby is being given is his or her own, there really is very little risk involved. The only "real" risk is that a small number of babies may have an allergic reaction to the preservatives in the cord blood, but a little benadryl easily clears that up.

Oddly, for about 24 hours following the procedure, babies smell like creamed corn. For some reason, the preservatives in the cord blood cause babies to give off this strange odor. Little Claire was no exception: When I held her immediately after the infusion, all I could think about was Thanksgiving dinner!

The other big news this week is that Claire seems more and more like her "old" self every day! As you may remember, last week, she was put on Phenobarb to control seizures that she was having. Unfortunately, Phenobarb is a heavily sedating drug, so Claire was catatonic for much of the week. Over the past week, we have seen her slowly become more and more feisty. She has been crying (and sometimes even squawking) during her assessments, and when she is happy, her eyes have been getting really big and she looks around eagerly. I'm so glad to have my baby back!

Two other positive developments this week: Claire passed her vision and hearing tests. We are so thrilled because vision loss and hearing loss are not uncommon in children with hydrocephalus. We still need to be followed as Claire grows to ensure that she does not experience progressive vision or hearing loss, but for right now, we are thrilled!