Child Of The Month

Ryan
by Jodi Kopala

April, 1994

My son, Ryan, was born at 35 ½ weeks after an uneventful pregnancy weighing 5 lbs. 4 oz. From the beginning he was always underweight, floppy and coughed a lot when he ate. He never fussed or cried a lot and was a real "good" baby. Knowing what we know now, those should have been our first clues that something was wrong. Our pediatrician told us from the beginning that since he was born early, he would be a little behind but would eventually catch up. Because of that we initially weren’t too concerned about his lack of progress.

When Ryan was 6 months old and not developing as he should, the pediatrician decided it was time for a neurological exam. He also referred us to a physical therapist at this time, where it was determined that he was severely hypotonic (low muscle tone). He has been receiving physical therapy twice a week since he was 7 months old. We first saw the neurologist when Ryan was 9 months old and she did an EEG, MRI and blood tests looking for an answer. Much to our surprise, the answer came from the chromosome testing. Initially they weren’t sure if it was his 13th or 15th chromosome which was affected, so they referred us to an geneticist for additional testing. I have talked to other parents who have gone years without a diagnosis on their child and I am grateful that medical technology had advanced enough for us to get an immediate diagnosis on Ryan (he was 11 months old when diagnosed). While it was upsetting to know what was wrong, it was more upsetting to find that no one could tell us anything about the diagnosis. All the geneticist told us was that he would most likely be retarded to some degree. I really felt the doctors didn’t feel it was worth their time to investigate his condition because it was so rare. I know that not much information exists on inv dup(15), however, the doctors provided me with little help or direction when I inquired about looking for information on my own. I bet it would be different if their child was affected.

When Ryan was around 14 months old, he started having seizures. After having a video EEG it was discovered that he was having tonic and myoclonic seizures and he was placed on phenobarbital. Also around this time he developed his first bout of pneumonia. Within the next 6 months he had pneumonia 4 times. When he was 20 months old, he started seeing an occupational therapist who made a connection between his eating and pneumonia. A videofluoroscopic barium swallow study revealed that Ryan was aspirating his food, especially liquids. We found that we could prevent the aspiration by controlling the consistency of his food. Once we started this, he went for a whole year without getting sick.

Shortly after Ryan’s 2nd birthday, we moved to North Carolina. We took Ryan to the University of North Carolina (a research and teaching hospital) to see what the doctors there knew. They were able to tell us a little more about Ryan’s individual condition but really didn’t know any more than we did about inverted duplication 15. I was real impressed with these doctors and felt like they were genuinely interested in Ryan.

Earlier this year, Ryan started having more seizures. The neurologist increased his phenobarbital dosage which started a chain reaction of other events. Within a few weeks his muscle tone decreased, his eating problems returned, and overall he was lethargic. He had another swallow study done which showed he was aspirating everything he ate. At this point we felt we have no choice but to place a gastrostomy tube (he has a button now) for feeding. The increase in his medicine, which I feel caused all these problems, didn’t control the seizures. He now takes depakote and his seizures are under control. It was upsetting when he had to get the tube because I felt like we were taking a step backward but he has made so much progress since the surgery that we know it was the right choice. His muscle tone has greatly improved, he has gained weight, is much more alert and active and has a lot more endurance than before. Most importantly, he hasn’t been sick at all. He rolls all over the place, can sit with some support and is getting ready to crawl. He doesn’t talk but babbles a lot and smiles and laughs more than he ever did. While none of the doctors will say that he is retarded or to what degree, it is pretty obvious to us that he is moderate to severely retarded - at 3 years old most of his skills are at a 6 month level. We see progress in him all the time which is encouraging for us. His first pediatrician told me the day I should start worrying about him was the day he stopped making progress. I really believe that is true and am grateful that that day hasn’t arrived yet.

Ryan has been attending preschool at a United Cerebral Palsy Center two days a week since last fall. Now that he is 3 and has entered the school system, he’ll be going there full time. I really think the services he has received there has contributed to his progress lately and I am anxious to see if he will do even more now that he will be there full time. I have heard so many horror stories of IEP’s and dealing with the school system and must admit I am a little apprehensive about this new experience. I have tried to educate myself on the process and what our rights are and have asked a lot of stupid questions. I am not always sure that I know exactly what is right for Ryan, but I am learning to trust my instincts.

Having Ryan has taught me to be more patient and assertive, and to really appreciate the little things in life. I have also learned to accept the fact that there are some things that happen to us in life which we have no control over. I have learned not to dwell on those things and to focus my energy on the things I can do something about.

UPDATE: July 30, 2000
Ryan continued to slowly make progress over the years. He was in a multi- handicapped classroom in kindergarten and first grade and at 6 years old he was functioning at about a one-year-old level. He still experienced seizures and we had to continually adjust his medicine as he gained weight. He was still tube fed but at his last swallow study he had made enough progress to allow him to start taking bites of food. Unfortunately we weren’t able to start that due to upcoming orthopedic surgery on his hips in April of 1998. The surgery went well but he developed some complications a couple days later and died a couple of days after that. While we always knew that he was medically fragile we never expected to lose him so young. Since his death a lot of people have commented on how difficult our lives were taking care of his needs. They don’t realize that is harder for us not having him in our everyday lives. I have several friends who have children with disabilities and as I talk to them about their problems with IEP’s and CAP I wish I still had those worries. I have been doing some work for Family Support Network of Wake County (North Carolina) which is an agency that provides support to families who have children with disabilities. It helps me to stay involved in issues that I know would have affected Ryan if he were alive. While we miss him every day, we have learned to go on with our lives. I think it has been the hardest on our daughter. She was only 3 ½ when he died and she’s only recently understood the finality of his death. While his time with us was way too short, we’re grateful to have had him in our life.

IDEAS sends its heartfelt sympathy to John and Jodie Kopala and family of North Carolina on the death of their beloved son, Ryan. Ryan was featured in our Family Portrait in the Fall 1994 issue of The Mirror.

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