After a horrific late term loss at 34 weeks we were terrified to go through another pregnancy but our doctors assured us we had nothing to worry about, puppy dogs and rainbows, everything would be AOK. You can imagine our shock and horror when the day after he was born our son Aleck was diagnosed with a neuro-muscular disorder that could render him immobile for the rest of his life. We started this blog as a way to communicate with our friends and family as we began a long road of medical procedures and treatments trying to give our son the best quality of life possible.
On October 10, filled with joy, hope and a bundle of nervous energy we headed to the hospital to finally meet our new baby. In June of 2010 we lost our first baby, a little girl, after 8.5 months of an “unremarkable” pregnancy. Lynn was induced and had to give birth to her, all 5 lbs and 4 oz. Needless to say getting pregnant and keeping this pregnancy was nerve wracking to all of us. But we were told, lighting doesn’t strike twice, and there was no reason to be worried about this pregnancy as well. We took solace in the idea that maybe this was god or the universe’s way of taking a life that wouldn’t have been able to make it in this world anyway. So of course we were crushed to find out our little baby boy was brought into this world with a disorder that very often labels people “disabled” for life.
We knew he was breached, a friend warned us of potential hip trouble, but we certainly weren’t prepared for just how beaten up our little boy was. When they removed him by c-section we heard whispers of “short-arms”, but thought nothing of it, we were just so glad he was alive, breathing, heart pumping. He came back to our room that evening, only to be taken a short while later for some routine blood work. After about an hour and a half we started to worry, where was our little boy? Soon we learned that they wanted to take him down to the NICU for observation, but we still didn’t know what was wrong. The nurse mentioned something about a “club foot” but that was the best answer we could get past 11PM at night.
As we awoke the next morning, in between our regular NICU visits to feed and bond with our new baby, we were greeted with a parade of doctors; pediatricians, pediatric orthopedist, physical therapists, geneticist, with overwhelming opinions about our sweet baby boy. First he was going to have a full body X-Ray followed by an MRI of his brain later that day. We held our breath as he was strapped in and taken away, praying that, if nothing else, his brain was OK. During the day one of the OBGYNs from my practice stopped by and we first learned of Arthrogryposis. (Arthrogryposis, also known as Arthrogryposis Multiplex Congenita, is a rare congenital disorder that is characterized by multiple joint contractures and can include muscle weakness and fibrosis. It is a non-progressive disease. The disease derives its name from Greek, literally meaning ‘curved or hooked joints)
Here is what Aleck has as part of his Arthrogryposis; a club foot, a dislocated hip, a supplexed hip, contractures in his wrists, hands, elbows and shoulders, and spinal curvature. Thankfully what he also has is a clear MRI with no signs of anything wrong in his neck or brain, and so far working organs so he can pee, poop, eat, hiccup, spit-up, sleep and cry just like any regular baby. So far most of what he can’t do are things babies of his age can’t do much of anyway. He’s unable to flex his elbows, or wrists, or release his fingers, so he doesn’t get his hands anywhere near his face. At least we don’t have to worry about him scratching himself. We are able with gentle coaxing to bend his elbows and relax his hands, but not to their full degree.
Our goal is to start this process early of helping Aleck along, correcting whatever we can correct now while he’s little and won’t have a memory of what’s going on. Also, he’s still very pliable at this age so who know what we can do in the next few years. We’d love for him to be able to function in this world as an independent being, able to walk, dress, feed and take care of himself without the help of others or machines, but more importantly we want him to enjoy his life as any other boy or girl would and we hope that we can be the encouraging and supportive parents that we know he needs for a fulfilling and happy life.