It was July in Virginia on a hot and sticky Monday when my contractions began. They were unbearably violent, and went on for 12 hours before I finally gave in and asked to be taken to the hospital. My husband and I had wanted to have a natural birth.
The pregnancy had been uneventful, and oddly enough, little Kyle was very “quiet”, never kicking too hard or moving around too much. Every now and then I’d feel a very soft kick. What a good, quiet little baby. Even the ultra-sound showed his face to look like a sweet smiling cherub looking back at me.
Back at the hospital, little Kyle was proving to be quite the stubborn boy as far as coming out was concerned. I’d been in ‘labor’ for over 12 hours and had only progressed to 7 cm dilation. Now every time I had a contraction my baby’s heart rate would drop perilously low. Doctors had decided it was time for a c-section. Finally Kyle greeted his mom & dad, safe and sound at a whopping 4 lbs, 11 ounces. They told us he was small, but healthy. Strange thing though, his umbilical cord and placenta were scrawny & withered. It was July 4th of the year 2000 when he finally came out. He certainly made a show of it – our little fire-cracker but we knew no better to ask why he was so tiny at full term, and what did it mean that the cord and placenta were small? We were new, young parents. Kyle James Scanlan had a full head of hair and was beautiful.
He didn’t take to nursing and we had to syringe feed him for the first 2 months. He also would only eat 1 ounce before stopping. It was difficult to get the recommended amount of food in him because he would not eat. We asked doctors, but it was always pushed aside and stated that he’d come around. He was a quiet baby. Rarely cried, and if he did, you could barely hear him. He wasn’t easily excited by loud noises, and he started sleeping through the night after 1 month!
After a while we noticed some things were different. He didn’t roll over like many babies. He was way behind in even attempting to sit and crawl, and he wasn’t babbling. No ‘mommy’, no ‘daddy’, not even ‘hi’ or ‘baba’. Something was weird, and we’d begun to ask. The doctor had no answers that were any different than before. He’s a little behind, he’ll grow into it.
Finally, it was a Thanksgiving get together and my husband’s house that started the ball rolling. Kevin’s aunt was the Director of Midwifery at Johns Hopkins and had been for several years. She noticed there were several delays in many developmental areas. She suggested that we visit a friend of hers to have Kyle checked up.
Shortly after Thanksgiving, we made an appointment, but before we could meet with the doctor Kyle developed a severe case of pneumonia and was airvac’d to a nearby hospital that had a PICU (pediatric intensive care unit). He was about 15 months old when this occurred, and was in the hospital for two weeks over Christmas. During that time, several doctors performed tests and blood work, and came in to see him. They determined something in his brain scans showed that there was something wrong, yet they did not know what it was. They did x-rays on his entire body and discovered that his forearm bones were fused (what we know as radioulner synostosis. Later, chromosome tests were ordered, and it was finally concluded that he had 4 X chromosomes, 49, XXXXY. We visited a geneticist and were given the bleak outlook for our son’s future. The better part of it for us was that our geneticist did tell us she did not know much about this syndrome and had only the information that was available to her from old research. She suggested finding support groups of other parents whose children had the same syndrome. That was the best advice we’d gotten.
I have to say that it was a difficult pill to swallow in the beginning, and the limited information on the internet wasn’t all positive. But we established connections, immediately sought early intervention to help Kyle through his difficulties, and began our new path to the future.
Since those first tumultuous years, we’ve all come a long way. Kyle especially. He will be 5 years old in July this year, and is attending special education pre-school, and learning every day and loving every minute of it! He started out with a state program that gave him physical, occupational and speech therapy through the age of 3 years old. From there he went into the public school system where he attended a school like environment and received his therapy there. He is communicating, learning, and socializing so much better. He has friends, and enjoys his life… what more could a parent ask?
Kyle brings so much joy to the lives of everyone he knows. He is a boy. He loves his cats, and loves dogs. He signs and uses his words every chance he can get. He’s silly! He loves to josh around with his teachers and his friends. He laughs full belly laughs and he loves to give out hugs. He holds up his school bus every afternoon so that he can hug and say good-bye to every kid and to the bus driver and assistant as well. He tells me “ I lah loo mommy” (I love you mommy). He loves to tickle and to be tickled, and he makes us smile.
Kyle is a special boy with special needs, and we appreciate every day we have with him. He is warm, he is loving, and he is happy. It is difficult sometimes for a parent to know that their child will have difficulties, but you take each day with them as a challenge, and appreciate what you have. I read once something that inspired me… our job with our boys is to do everything in our power to make sure that they grow up happy, loved, and with a community of people that care about them. Think of the very core of what you want for your children and it is, in a single word, happiness. And that my friends, is always attainable.
Good luck and best wishes in your wonderful and unique journey ahead with your eXXXXtra special sons. We’re in it with all of you and as you can see, that journey is not all dark tunnels. It can be sunshine and belly laughs, and special hugs and new fun every day.
Story Submitted by: scanlan49xy@hotmail.com
