Genetics Care, Close to Home…(Noonan Syndrome)

We are currently parents of three children – Molly (age 7), Morgan (age 5), and Brady (age 1). Our middle child Morgan was born 5 & 1/2 weeks premature due to a very complicated pregnancy. Initially doctors thought she was a healthy 6 pounds 2 ounces baby girl but that all changed.

Family Photo, Father, Mother and 3 Children
Scott and Joy with Morgan (5), Brady (1) and Molly (7).

At just six days of age, Morgan was hospitalized for a urinary tract infection and jaundice. After that, things just slowly got worse. Each month, during Morgan’s first year of life, she was hospitalized six to seven days at a time for almost anything you could think of – RSV, rota-virus, dehydration, high fevers, vomiting, respiratory distress, etc. Besides all of these complications, Morgan did not want to eat. We told our doctors many, many times that we had to force Morgan to take every ounce of milk. We felt we were starving our child, but not at all purposefully.

When Morgan was approximately eight months of age, we were referred to Madison for genetic counseling. Fortunately, the University of Wisconsin Clinical Genetics Center provides outreach services. Instead of traveling four to five hours from Holcombe to Madison, we were able to travel one hour to Eau Claire for Morgan’s genetics appointment. Dr. Wargowski, our geneticist, and Wynne Cook, the project director of We’re For U, the Western Regional Center for Children with Special Health Care Needs, were wonderful. After already having seen so many different professionals, we felt that Dr. Wargowski and Wynne were one of the first ones to really understand what we were going through. They seemed to believe us when we told them that Morgan plainly refused to eat. They really wanted to help us find some answers to help our child. Unfortunately, at this point, no definite answers were available (like she has “this syndrome” and “we are going to do this”). Yet, Dr. Wargowski and Wynne supported us; they made us feel like they were behind us. It wasn’t time to give up hope yet.

Over the next five months, Morgan’s feeding issues did not improve. She continued to fall off the growth charts and become more and more frail. We spent more hours on the road and sought out opinions from many other professionals in the area. Finally, a team of professionals suggested that Morgan may have Noonan’s Syndrome.

We thought now would be a good time to see Dr. Wargowski again. With Wynne’s help, an appointment was scheduled to see him in Eau Claire. Dr. Wargowski confirmed the diagnosis of Noonan Syndrome. While many people may panic and dread hearing the word “syndrome”, for us, after thirteen months of the “unknown”, it was music to our ears. Wynne and Dr. Wargowski were again very supportive. They helped us learn about Noonans. They gave our pediatrician information about Noonan’s. They helped link us to support groups and other families dealing with Noonan’s. A few years later, they were available when we were trying to make the decision about whether we should have another child. (We, in fact, did have another child after Morgan – a healthy and strong baby boy named Brady.)

Genetic counseling is a wonderful service; it is much more than just telling you that your child has a syndrome and convincing you from having more children. People should never be afraid to seek the expertise of genetic professionals. Morgan is now five and thriving well, but we still see Wynne and Dr. Wargowski and benefit from their knowledge. They always are available and seem more than willing to try to answer any questions that may arise. (Just last month we went back for their opinion on the growth hormone.) It is a great advantage to have We’re For U and the Genetics Clinic to turn to for help and support.