Tuesday, June 16, 2009

Baby Hayden Update 6-16-2009

Ok, prayer warriors...our work ain't done yet! When I last reported on Hayden, things seemed to be looking up. However, late last week his white blood cell count seemed off so the medical team at Dell Children's decided to give him a course of antibiotics to help him out. I've been hesitant to post an update on Hayden after this because as we all know, I am a drama queen who is prone to over exaggeration. I really didn't want to make things look or sound worse than they might be. Unfortunately, Kellie & Anthony received some not so good news yesterday that could mean something far more serious and I am here to ask for your prayers again.

In a nutshell, white blood cells are our defenders against disease. What most people don't know is that within WBC, there are three different types of WBC of which the neutrophil is the most prevalent. Think of these guys like the Marines; they're first into battle and do most of the work when waging war against infection and disease. A normal healthy person will have an average neutrophil count (ANC) 1500 or more of these guys in a blood sample. If you're slightly ill, you might have anywhere from 1000 to 1500. If you're really feeling a bit under the weather, you've got about 500 to 1000. Less than 500 and the next strain of bacteria could kill you. Hayden's current count is 120. Basically, if he were to get an infection he has no defense against it and could die in a mere matter of hours. Even the natural bacteria on his skin could cause complications.

The good news is--yes, there is a glimmer of hope in all of this--that after numerous tests there appears to be no sign of infections, Hayden seems healthy and hale, and he's received a couple of rounds of antibiotics. It's just that he is currently experiencing severe neutropenia (abnormally low neutrophil count for those of you keeping track at home!) and the doctors can't figure out why.

The bad news is that because infection has been ruled out, the causes for the low ANC could be because:
a) his mom had some disorder during pregnancy, like pre-eclampsia OR
b) he could have some other disorder that is akin to the blood cells from his mom attacking his and wiping out the neutrophils (similar to what happens when a woman who is Rh negative gives birth to an Rh positive baby) OR
c) Hayden's bone marrow is not able to keep up with production of said neutrophils OR
d) Hayden could have congenital neutropenia aka Kostmann's Syndrome.

Of these, they've pretty much decided that option A is not an answer--Kellie had a textbook perfect pregnancy with no complications. Option B is best case scenario because even though it sucks, it should cycle itself out in about two months and Hayden can come home and will be fine other than the cleft palate surgery and/or therapy he may receive later.

Options C & D are the scarier ones. Kostmann's syndrome is essentially "bubble child" syndrome--the child has almost no defense against normal bacteria and usually has to receive a kind of gene therapy for the remainder of his life. While the treatment for this has definitely improved the odds of kids who have it, the gene therapy *could* lead to leukemia or cancer later on in the child's life. And of course, Option B could be a sign of aforementioned cancer or leukemia if his bone marrow is not producing it regularly.

Obviously Hayden's folks were in rough shape last night after receiving the news; they can't take the other children to go visit him until his ANC goes back up to a safe level and there isn't a pediatrician in the city who would allow Hayden home until that level is at least 1000 which could mean a long stay in the NICU. Currently, we are waiting to hear results on additional tests they are running and a hematologist/oncologist has been consulted and is working to help Kellie & Anthony figure out what's going on. We may have some results tonight or early tomorrow so until then, your prayers, well-wishes, and happy thoughts are greatly appreciated!

Kelly & the Gang

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