In Her Own Words

I was expecting my third child on May 11, 1990. I had previously worked in an orthopedic hospital, so I was concerned about hip dysplasia, scoliosis, clubfeet and heart problems. Down’s syndrome did pop into my mind also as I was feeling quite old by that time. My oldest, Tor, was seven and my Nina was five-and-a-half. We were well into baseball season. Because Paul was overdue, I enjoyed preferential treatment on the ball fields. People carried my chair, got me the best spectator locations and kept me fed and hydrated.

Paul arrived three-and-a-half weeks late, by c-section, weighing in at nine pounds 15 ounces and 22 inches long. All of my children were overdue. (My kids took longer to bake.) I remember hearing someone in the O.R. say “uh oh” and the anesthesiologist told me that there was a problem but it was very fixable. Suddenly, I got a crash course on cleft lip and palate. Paul was born with a bilateral cleft lip and palate. I had heard of it before, but didn’t really know what it was, nor could I remember ever having seen anyone with a cleft before. That was a comfort to me because if it was the fourth most common birth defect and I had never seen anyone with a cleft then it must be “fixable.”

My initial concern was feeding. The hospital found an old lamb’s nipple but discovered that it was dried up and cracked. We tried breast feeding, but because he had a cleft palate, he was unable to get any suction. Ultimately they rigged up a bottle nipple that I held between my first two fingers with the teat toward him, with a feeding tube running from that to a syringe. When we got home five days later, the feedings were not much better. Every time we went to the doctor, I discovered that Paul was losing weight. I was a failure. I couldn’t even feed my baby. My house was in disarray, the other kids weren’t getting fed as they should have and I was constantly trying to get food into Paul. On top of that I was trying to pump, so Paul could have breast milk.

Somehow I was given the number to the Maryland Society for Cleft Lip and Palate Children, which is a support group for families that shares information and experiences. Two days later, I received a box of Cleft Palate Nursers. Our lives turned around! Now I could worry about how the cleft would affect Tor and Nina and concentrate on finding a treatment plan.

How was I going to be able to keep up with all their activities? All I could see was a huge wall that I didn’t know how to get over or around. My husband Tom, Paul and I “interviewed” several plastic surgeons in the area to see who we felt most comfortable with. We chose Dr. Craig Vander Kolk and the clinic at Johns Hopkins. Everyone was so friendly and experienced in treating the cleft, the whole child and us the parents. He reassured us that the cleft wouldn’t be a major focus for the next 20 years as I had heard and feared. He explained that most of the surgeries would be completed during the first year and then it could go years before the next one. Tom and I felt that we were putting our treasure in the best hands with Dr. Vander Kolk.

I became involved with the Maryland Society for Cleft Lip and Palate Children. It was incredible to be able to draw strength by networking with other people who were going through the same things as we were. They understood that I was not ashamed of having produced a baby with a birth defect, but concerned about what he had to go through. I think I was using a lot of energy trying to convince everyone that I was doing fine. In retrospect, I probably wasn’t.

As we proceeded with Paul's surgeries, the need to document Paul’s every movement and phase took over me. I took out the camera and started taking photos. I had taken a considerable number of pictures of Tor, a couple of Nina, but I took shoeboxes full of my youngest baby. There were so few pictures of Nina; she later asked if she had been adopted. In my defense, Tor was 18-months-old when she was born and quite demanding. Then it was very important for to me to document the process as I watched Paul’s precious big wide smile disappear, replaced by smiles with a closed lip. I put together ALBUMS. Later, I even included the nametapes from the hospital door and his PE tubes after they had fallen out. Do you think this may have been my way of dealing with things?

Our focus centered on different aspects of Paul’s treatment. We were referred to the Anne Arundel County Infants and Toddlers Program, where Paul received occupational therapy (OT) and speech services for eight months. After that it was determined that he did not need further services. At age three, Paul had surgery to lift up his nose. When he began school, it was discovered in Cleft Clinic that he had a perforation in his eardrum and some minor hearing loss. I went to his school to discuss ways to deal with this and the teachers were very good about his seating arrangements. In 1998, I provided written testimony and attended hearings in Annapolis with the Maryland Society for Cleft Lip and Palate Children supporting a bill that mandated that HMO's cover speech and language therapy and orthodontics for patients with cleft. Seven-year old Paul and I were there as the Governor of Maryland signed the bill into law. When Paul was 12 he had a bone graft.

After the first year, the cleft was pushed to the background. We flew to Spain to visit Tom’s parents who lived there in the winter. We marched in Annapolis to oppose cuts to school budgets. We participated in the Learn to Swim Program at the U.S. Naval Academy. We went to Norway to visit Tom’s parents in the summer. My mother-in-law seemed to have some difficulty with accepting the cleft.

Looking back, I realize that when my mother-in-law informed me that the cleft didn’t come from their side of the family she wasn’t attacking me, but was possibly trying to protect her own son. As a past president of the Maryland Society for Cleft Lip and Palate Children, I often hear that family members make such statements. I think that grandparents are in a unique position. They are concerned both about their child and their grandchild. Unfortunately, people do not always think before they speak.

Because of the cleft, I have met some incredible people who otherwise would never have entered my little world. I am fortunate enough to be able to call some of them close friends. To have stumbled into Dr. Vander Kolk and the Johns Hopkins Cleft & Craniofacial Center’s care was outstanding. In 2001, I acquired a position at the Johns Hopkins Cleft & Craniofacial Center and I am now Dr. Vander Kolk's Administrative Assistant and Medical Office Coordinator. I cannot think of a place that I would rather work. Dr. Vander Kolk has been Paul’s surgeon since he was a newborn. He has spent years truly caring about his patients and working to perfect surgical procedures. Dr. Richard Redett joined the team in 2003 and I have been impressed with how caring and enthusiastic he is. Like Dr. Vander Kolk, Dr. Redett is a gifted surgeon who achieves fabulous results.

People sometimes ask me if I didn't have another child because of having a child with a cleft. Knowing what I know now, I wouldn’t decide not to have another child because of the cleft. The cleft is not who Paul is but rather a small part of him.

I am extremely proud of all of my children. They are my greatest accomplishment. Tor is my Light; he is so funny and generous. Nina is my Strength; she is hardworking, strong and compassionate. Paul is my Wonder; he is strong, outgoing and kind. We have discussed whether the cleft may have made him a stronger person. He believes it has.