Healthy Baby

I've been meaning to write a post about this for awhile, but my thoughts never really came together. So, here are some unformed musings...

When Emily was a few days old, we were told that one of the many infant screenings they do now had come back "inconclusive" and required further testing. Emily has one of the two genetic mutations required to be diagnosed with Cystic Fibrosis, a life-shortening disease that seriously affects the lungs & digestive system. At ten days old, we brought her to CHOP (Children's Hospital of Philadelphia) for further testing (rather traumatic, but more so for us than her), after which we had to wait about 6 weeks to hear final results. We asked some friends to pray, but for the most part it was something that we tried to leave in God's hands and not talk/worry about. While we had been told that the chances of her testing positive were quite low, the question was of course in the back of my mind throughout that time. Emily's results did come back clear (meaning that she is a carrier for CF, but does not have the disease), but the experience has made me do a lot of pondering about this idea of health. It's interesting how many people comment on a baby being healthy, or "perfect" - and I sort of wonder what this means. And what qualifies as "healthy" - the absence of active sickness? All the right genes in the right places? Emily could bear the marks of a disease, but still look healthy. Clearly none of us are perfect! And even on a physical level, we all bear the marks of being born into a fallen world. Yet every one is fearfully and wonderfully made. I remember reading an article (I can't remember where it was from, or if it was for a class) written by a woman whose baby had Downs Syndrome and who wondered about our American idol of perfect health, especially after hearing other babies exclaimed over as "perfect," but not hers. She didn't value her baby any less for his diagnosis, and wondered why others seemed to. She pointed out that even before the Fall, human beings were not perfect, and wonders if in Heaven we really will all have what we consider perfect health (lack of Downs Syndrome or CF or physical handicaps) or if being in the presence of God will fill us with such Health that our physical limitations will be irrelevant. I'm sure someone could talk more extensively about the theology of all of this, but I thought the questions were interesting. Initially I wondered if I would I bond with Emily less/more/differently knowing the potential challenges in store for her?

Another question I'm considering is what to do with the information that either Alasdair or I and potentially both of us is a carrier for CF. One of us has to be in order for Emily to have received the mutation. If only one of us is, then we can't have a child with CF, since it's recessive. But, if we both are, then there is a 25% chance that any child we have would have the disease. Should we be tested to find out? If we did, what impact would that have?

Ponderings aside, the real impact the experience has had is to give me a small bit of insight into what it would be like to have a child who required significant medical care. Walking around CHOP and seeing all the parents there with children for so many different reasons. Wondering what is going on inside your child's body. For so many, the test results don't come back with good news. We have friends who have children with CF, and I think I took the grace and faith with which they manage that for granted until I considered doing it myself.

More recently, a few friends have had babies with serious medical conditions, and I have been moved to pray for them with a passion I wouldn't have before. If you are the praying type, maybe you would also like to lift up Jillian Gregg (born on my birthday, August 2) to my coworker, who has two holes in her heart and is looking at heart surgery by the time she is 3-4 months old to fix them. You can read about her & her parents beautiful faith at threegreggs.vox.com. Also, baby Mitch Richards (born to our family friend Cindy Craig Richards & her husband this week), who is currently also on a feeding tube as well as an artificial respirator at Mass General. My heart breaks for these little babies and their parents, and I am so grateful to talk to a God who cares even more than I do and loves them even more than their parents do!