Monday, April 13, 2009

You're the Cure on the Hill Advocate Spotlight: Melanie and Nolan Domrase

We are just one week away from You're the Cure on the Hill 2009. Excitement is certainly building here in Washington D.C. as we look forward to greeting advocates from around the country. This week, we continue to profile the advocates who will soon share their stories with our nation's lawmakers. Today, meet... Melanie Domrase and her son Nolan from Michigan!
Nolan was born on May 8, 2007 at 41 weeks gestation via c-section after turning breech at 39.5 weeks. He weighed 8 pounds, 6 ounces and was 22 inches long. I had a completely uneventful pregnancy and birth other than him flipping at the last minute. He was the most beautiful baby I had every seen. I studied him intently. I noticed that Nolan immediately rolled to his left side after birth and that his right eye never opened. The left-side issue never concerned me in the hospital, but I had a doctor called in because I thought he was perhaps blind on the right side. The doctor came in, opened his lid, shined a light in, shut his lid and said, "No, he isn't blind." and left. Later, we would realize that his left side preference and closed right eye were obvious indicators of Nolan's fetal stroke. He continued to be left-side dominant and have a weak right eye, as well as a little asymmetry. We would position him on his right side after he fell asleep to round out his head for cosmetic reasons. Around six months at his well baby visit, I mentioned the left side dominance again to the doctor and he said not to be worried, but to come at 8 months, instead of 9, for the next well baby visit. At about 7 months my son was playing in the living room and two major things happened. One was that he made a movement with his right arm that sent chills down my spine. Later I will explain why. Two was that he tipped over on his right side, never tried to catch himself, fell on his face and continued to play with his left hand while laying on his face. He wasn't even aware he was on his face! The movement with his right arm scared me to death because I knew that movement. My father suffered a stroke at home, in the middle of the night, when I was 15 years old. His rehabilitation was a family affair and I learned a lot from the experience, especially about movement. Looking at my son was like looking at my father. I immediately called the doctor and went in the next day. I took Nolan's clothes off, set him on the table and said, "My son is moving like he had a stroke." The doctor looked at me like I was crazy. I didn't know children could have strokes, let alone in utero. I tried to convince myself that wasn't it because I would know if my son suffered a stroke after birth, especially after my previous experience. It's a serious event. The doctor sent me to a physiatrist. The physiatrist sent me to PT/OT, for a neurological evaluation and for an ultrasound. The physiatrist called me immediately after the ultrasound and said that they found something on his brain and to get to a neurologist as soon as possible. Nolan was already in PT and OT and the therapists agreed that he moved like he had a stroke. It is a very distinguishable movement. The neurologist did an evaluation and ordered an MRI and EEG. She confirmed that he suffered a fetal stroke in the second trimester of my pregnancy. Her prognosis was very good for Nolan; however, he continued to fall behind quickly developmentally. My husband and I decided to just go for it. Nolan has had between 4 and 7 sessions of physical, occupational and speech therapy per week since his diagnosis. We have done everything in our power to center our lives around his affected side. Nolan went from literally not knowing the right side of his body existed to using both hands and feet almost equally, crawling, walking and now almost running. He continues to amaze us with his intelligence every day. He has learned to sign because of his language delays. We are very hopeful for Nolan's future and we continue to work with him in every part of his life every day. All of the pain I endured as a teenager with my father's stroke, which led to his eventual death six years later, has become so clear to me. Had my father not suffered that stroke, I would not have been able to diagnose my son so early. My father suffered so that my baby could survive. Who knows how long Nolan would have gone undiagnosed had I not been through this with my father. As strange as it sounds, my own story amazes me sometimes. It's a miracle to me the way things have come full circle and I am thankful for it. I thank God every day for Nolan's stroke. I wouldn't want my life any other way.
Stay tuned for more You're the Cure on the Hill advocate profiles throughout the week...

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