Bella Marie's First Maskless Pic – Newborn Screening

Bella June 12 - No Mask

 We got lucky today at the hospital with our timing.  The nurse had to administer Bella Marie some medicine through an inhaler and so they took off her mask and allowed us a brief window to snap a picture.  Someday she may look at this picture, the first picture we have of her without a mask on and it may upset her or embarass her because of how small she is and wrinkled and bruised.  I hope she doesn't react that way.  I want her to know that I know she is a beautiful little girl just like her mother and this picture exhibits the strength and willful resiliency of a little girl who will be very successful in life because she's had to work very hard from the first scary moment she entered this world, just like our two sons.

So in New York State, the Newborn Screening Program screens babies for forty different congenital diseases and the HIV virus.  Most of the disorders screened for are quite rare, but they are usually very serious, particularly if left undiagnosed and untreated.  Typically, the screen is done on the day that the baby leaves the hospital, however, since it was already known that our babies would be in for awhile, they did it the day they were born.

The Newborn Screen is generally a "no news is good news" situation.  The State will call the hospital right away when there is an issue, but if the screening is clear, they typically take thirty days to report it.  Based on this, we thought we were in the clear but learned on Wednesday that Noah, in fact, tested positive for Congenital Adrenal Hypoplasia (CAH).  We were quite upset to learn this two weeks after the fact.  The hospital was a bit non-chalant about it, indicating that they didn't want to unnecessarily worry us. 

With CAH, the lack of an enzyme can cause shock or death in infants because the kidneys lose too much salt.  The condition is treated with steroids and special minerals to replace lost salt.  Of the diseases screened for, it is moderately common, occurring in one out of every 15,000 births.  The doctors are not yet treating him for the condition because they have not noticed any clinical signs that he is having issues.  He would typically have a low pulse (low heart rate) and be lethargic, but in fact, he has been quite active and despite the occasional spell, his heart rate has always been in the normal range.

I understand that the nurses think there is a lot going on for us, as new parents with three very premature babies, and that they don't want to burden us with all of the things that can go wrong, but we both feel a bit betrayed by not being told before now.  Yes, I know that disclosing or not disclosing the issue to us doesn't change the reality of the situation, nor the decision on treatment, but I feel like we put a great deal of trust into these professionals and I would expect honesty and full disclosure in return.  After discussing my feelings on the subject with them, I think they understand and we can put this matter behind us. 

I have no quarrel with the nurses and staff, they really do an excellent job, but between this and the issue of initial non-disclosure with the blood on the brain that I wrote about last post, we had a bad day (Wednesday) and left the hospital a bit upset. 

In any event, they will continue to monitor Noah and in two weeks time, they will administer another Newborn Screening.  He looks good, a fair bit bigger than the other two babies and as I said, doesn't seem to be showing any clinical signs of issues.

Owen started getting some breast milk for the first time today, which is a great sign that he is recovering well.  He gets a half a drop (cc) every hour and has been stomaching it well all day.  Nikki had the opportunity to change Owen's diaper before I arrived tonight and I later watched her struggle a bit with Bella Marie's.  She's a bit feisty (Bella, not my wife…actually my wife is too, but that's besides the point) and she is so, so tiny (Bella, again ).  The wires from her machines are often in the way and the diaper, as small as it is, is comically large for her (think clown pants).  I could see why she had so much trouble (think microsurgery while wearing mittens).  It was a funny and cute moment. 

The babies were doing great today and I feel absolutely ecstatic about it.  We spent a fair bit of time touching them and placing our hands gently on their heads to calm them when they got upset.  I think I could learn to like this parenting stuff.

- Papa Charley