![Mayo Clinic home page [logo]](/images-global/mayologo.gif)
Discover how you can help support Mayo Clinic.
Arleigh and Kim Wangen with their youngest son, Isaac.
Isaac Wangen has been an avid wrestler since he was in kindergarten. He and his family have been wrestling with ectodermal dysplasia since he was born. The 11-year-old fifth grader at Hayfield Elementary School in Hayfield, Minn., isn't about to let his condition take him down.
"Isaac may be the smallest guy in his class, but he's probably the toughest," says Kim Wangen, his mother. "God gave him a strong and compassionate heart and will to survive. Whether it is his zest for life or his intelligence — he's a straight-A student — Isaac is tough."
Isaac was born to cheers in the delivery room. With three daughters (Lacy, now 23; Rose, now 21; and Hannah, now 16), his parents were hoping for a boy. Kim's physician told her the baby had a cleft, an abnormal development of the upper lip and roof of the mouth. Cleft palate and cleft lip can cause problems with feeding and speech and can be disfiguring.
"I remember there was a hush in the room when I first saw Isaac," says Kim. "I thought he looked different, but it didn't matter. This was my son. The first thing I said was, 'It doesn't matter, little man. I love you.'"
"But at night in the privacy of my hospital room, I cried thinking about how others would view and treat Isaac when he was older," says Kim. "A nurse who checked on me saw that I was upset and talked to me about my fears. She found an old pediatric medical book with a picture of a child born with a cleft and a picture of him after it was repaired. I will never forget the relief I felt. Here was a picture of a child with a wide smile — a little crooked, but beautiful — repaired within a year of his birth. I felt hope that a 'fix' was possible."
Two days later, Kim and her husband, Arleigh, took Isaac to Mayo Clinic for an appointment with Uldis Bite, M.D., a plastic surgeon who specializes in craniofacial anomalies. Little did they know then how often they would make the trip to Mayo Clinic in the years ahead.
"I remember the first appointment with Dr. Bite and his team like it was yesterday," says Kim. "From the moment we met him, we felt acceptance and hope. He was warm and positive and told us, 'Don't worry, we'll fix Isaac. We'll give him the best smile we can for his graduation picture.' In that way, he let us know this was a long-range plan, and that Isaac would be fixed to look the best he could. It was the best news we could have heard. Dr. Bite laid out a plan for Isaac and coordinated a team of doctors and specialists to begin the road to repair and recovery."
Isaac with Uldis Bite, M.D., a pediatric plastic surgeon. The team of specialists caring for Isaac also included a prosthodontist (teeth restoration), speech pathologist, ophthalmologist, oral surgeon, urologist, geneticist and ear, nose and throat specialist.
The couple's sense of control was about to be thrown off. Kim, a registered nurse at Austin Medical Center — part of Mayo Health System — suspected something more might be wrong with her son. He overheated easily when dressed warmly; and he had sensitive eyes, constant nasal discharge, dry skin, thin wiry hair and late tooth development. Kim had started looking through pediatric journals. One day she ran across a picture and description of a boy who had ectodermal dysplasia. It fit Isaac exactly.
The diagnosis was confirmed a month later when the couple met with Virginia Michels, M.D., a pediatric geneticist at Mayo Clinic. "It was hard to hear, but at last we had the full picture of what we would be wrestling with," says Kim. Since then, Isaac has had 10 surgeries at Mayo Clinic, the first when he was 3 weeks old. The procedures — six involved hospitalization at Mayo Eugenio Litta Children's Hospital at Mayo Clinic in Rochester — include:
The Wangens are checking into getting a small denture plate for Isaac's upper jaw. He has enough primary teeth to allow him to eat soft foods — pizza, spaghetti and ice cream — but he has few permanent teeth. When he is older, he will need dental implants so he can eat and talk normally and look normal. After one surgery, Isaac needed a blood transfusion and had to be in arm restraints for two weeks. After the bone graft last year, he couldn't run or jump for three weeks — not easy for an active preteen.
Isaac has wrestled in five state tournaments. "I just keep on trying to do the things I like," he says.
The restrictions and his daily routine would throw many children. Isaac takes it in stride. He soaks and washes out his eyes every morning because he doesn't make many tears and his eyes are prone to infection. He needs 10 to 12 hours of sleep at night to stay healthy. He has trouble sleeping due to his nose and mouth repairs, so he needs to log more hours to get adequate quality sleep. He has to protect himself from overheating because he doesn't sweat much. During sporting events, his parents wet his skin and hair down with water bottles to keep him cool.
In other ways, Isaac is typical for his age. He loves sports, especially wrestling. He has been in five state tournaments and recently placed fourth in one. He loves to fish, play drums and bells, and draw cars. He loves animals and his family. And he has maturity beyond his years.
"People shouldn't care what I look like; it isn't important," says Isaac. "This condition is harmless as far as I'm concerned. It doesn't hurt me in any way. I'm just a kid who loves sports. I have learned to never underestimate myself. I just keep on trying to do the things I like."
Kim credits a strong support system — family, a close-knit community and church — with helping the family during the last 11 years. "The old saying 'It takes a village to raise a child' is so true," she says. "Everybody was there for us when we brought Isaac into the fold, and they have been there the entire journey, offering help, love and humor. Arleigh and I learned to face everything together, as a team. When one of us was down, the other one was usually up and could keep us both going." She also cites proximity to Mayo Clinic — only 40 miles from the family farm between Sargeant and Brownsdale, Minn. — as a godsend.
"We meet people from all over the country and the world who travel miles and miles to seek treatment and hope at Mayo Clinic," she says. "We thank God all the time that we are able to access this facility with such ease and from such a short distance."
.
