I am still trying to grapple with the news that Dr. Ischira has told us. The news was not good.
Our child, Hollister Derek, who is only a few days old, is very sick. He is currently in the NICU ward, where he is being closely monitored by doctors and nurses and has been undergoing a series of tests, to see what is exactly going on with him.
The doctors think he may have a disorder known as Harlequin-baby syndrome which means that the keratin layer of his skin has thickened; because of this, his skin is red in color, cracked, and prone to bleeding. His eyes and nose appear to be turned inside out and his mouth is fixed in a horrifying grimace due to the contractions of his skin. He is prone to massive infection, which could very easily kill him, so they have him in isolation, where only medical staff can tend to him.
If Cara or I see our son, we have to gown up: gloves, surgical cap, mask, gown, slippers. We cannot touch him unless we are fully gowned up and it is only for brief periods.
They don't know how long Hollister will live, but one thing is certain: the disease can very easily kill him (if that is exactly what he has), so instead of celebrating our brand new son's birth, we may be making funeral arrangements for him. We are both numb with shock; we don't know how to break the news to waiting family members who don't know that our son has been born yet.
We will have to do some heavy duty research on Harlequin baby syndrome (also known as "Alligator Baby Syndrome") when we go home. We have never even heard of it, and both of us are wondering if we could have done something different to see if we could have prevented this from happening to our baby boy.
Cara and I have been arguing the past few days, blaming each other for our son's pitiful condition. It is not going to do us (or Holister) a bit of good; we are going to see if there is anything that can be done to help our little boy live. Right now, though, it is hard to see past the diagnosis and the fact that our baby boy might not even survive the next few days to a week.
~To be continued.~