Sara was born in May 2007. Throughout my pregnancy, I had a "foreboding" that something was not quite right, even though the doctors assured me that everything was OK. Sara was my third child and my pregnancy with her just felt very different than it did with my first two: my stomach was much smaller and I didn't feel Sara move around as much as Anna and Ryan did. I tried not to worry month after month.
I had a scheduled repeat c-section and the we, as well as the doctors, were shocked to see that there was clearly something wrong with Sara's arms and hands. The neonatologist rushed Sara to the NICU where every test was performed, from x-rays to MRI. Slowly, throughout the day, all the test results came back "normal" and after 10 hours in the NICU, I was finally able to hold my baby girl.
How did it happen? Why did it happen? What did I do? During my pregnancy, I was sick with a stomach virus, took a fairly hard fall on a ski trip, had "borderline" gestational diabetes that was controlled through diet, and have a thyroid disorder for which I took medication. Sara did not move around throughout my pregnancy until 3 weeks before I delivered. Her head was on my left side for months. Did any of these things cause the arthrogryposis? I probably will never know.
One of the most frustrating things over the first couple of weeks after she was born was that no doctor could (or would) tell us what was wrong with Sara. A friend who is an occupational therapist was the first person to mention arthrogryposis. The pediatric orthopedist gave her the diagnosis of arthrogryposis, type amyoplasia, when she was about 3 weeks old. Sara has been wearing splints and receiving OT services since she was 5 weeks old. It was hard for me to believe that her little deformed hands would one day be functional and I though that the OT's were just trying not to discourage me when they offered ideas and toys for her. But Sara did start to actively move her muscles and began to try to be purposeful with her movements when she was about 9 or 10 months old. At age one, she was able to hold light toys (especially small easter eggs!), lift her arm the height of her chest, open and close cabinets, and push her play with her cart. Her right arm/hand is stronger than her left. She is very motivated to use her arms and is figuring out her own way to use what she's got. Sara does not use her bicep muscles and we're not positive that she has any, but uses most other muscle groups in her arms and hands, though they are quite weak (but getting stronger by the month!). Other than her weak arms, her developmental milestones have all been normal. She sat alone at 6 months, walked at 11 months, and said her first word around 1 year. We have had endless doctor appointments with endless specialist and no outcomes. Each has had very little useful information but would like to see us again... The last place we took her to was to see a doctor who is the director of the brachial plexus clinic. He seems to be the most promising resource if Sara will ever need surgery. The most helpful people have been the occupational therapists. We have so much hope for Sara. She has brought much laughter, gratitude, and love to our family. We are so proud of her and of every new little thing she learns to do. She has made me a better school psychologist and better person and I couldn't imagine life with out "Sweet Sara May".
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