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Cleft-Craniofacial Community Stories

Keagan’s Story

My name is Chris VanHoof. My wife Jaclyn and I live near Seattle, and we have a son named Keagan that was born with a cleft palate. We did not know Keagan had a cleft palate until eight hours after birth when they were circumcising him. The nurse put her finger in Keagan’s mouth to let him suck on it, and to her surprise there was not a palate there for him to use to create suction. We also have a five-year-old daughter named Kennedy. She was born without any cleft, and there isn’t any family history of clefts. I remember the doctor coming into our room and giving us the news about our son. The cleft was just the palate, but it was gum line to gum line so it was wide as it could be. We were both emotionally distraught. He then told us they were shipping us to a hospital in Tacoma where they would teach us how to feed Keagan and care for him. A half hour later, an ambulance showed up to pick up our son and take him to Tacoma. We followed in our car. It was ten hours after birth and our son was no longer in our possession.

In Tacoma we spent four days trying different feeding techniques and really were struggling to get our son to eat. We decided to try the Haberman bottle. I think they were reluctant to let us let us leave, but we just wanted to get home and have our family together again. For the first six weeks, Keagan struggled to eat and was actually burning more energy than he was eating. We then went to Children’s Hospital in Seattle and they put an NG tube Keagan’s nose in order to feed him. I remember that we could not leave Children’s without one of us passing the test of replacing the NG tube. My wife passed the test within ten minutes; she is a very mentally strong woman. We would use the Haberman and then finish off the feeding with the tube so that Keagan wouldn’t get lazy and depend on the tube. Keagan had the tube for about four months and gained considerable weight and strength.

We checked out the cranial facial centers in Tacoma and Seattle. We felt very comfortable at Children’s Hospital in Seattle and decided to have them perform the surgery that would fix Keagan’s palate at one year old. I remember going to Children’s for consultations and evaluations before the surgery. Each visit, the nurses and doctors were very courteous and helpful.

Before we knew it July had arrived, and it was time for surgery. My wife and I left Kennedy at home with a family member, and we took Keagan to Seattle. We live about forty-five minutes from Seattle, and I wanted to turn around and go back home probably fifteen times before we got to the hospital. We arrived at the hospital, and they prepared Keagan for surgery. We were both devastated when they took Keagan through those doors to surgery, and we couldn’t be with him.

We met a family in the waiting room from Eastern Washington whose son was in surgery for a cancerous tumor. Both my wife and I looked like a mess, but immediately we were humbled. I remember praying for their son at the same time as ours.

Four hours later our pager alerted us that Keagan was out of surgery. The doctor found us and told us that Keagan’s surgery was a success. I think I gave him a hug. Keagan was in recovery for about an hour and then they brought him into our room. Keagan wore arm restraints and was very swollen, but was happy to see and hear his mother. We spent one night in the hospital and were released the next morning; a total of twenty five hours from the time we left home until the time we pulled into our driveway back at home. Keagan had the arm restraints for two weeks. Thirty days after the surgery we returned to the hospital for a check up, and everything has been great since.

Keagan is almost three and half years old now. His speech is good; we just took in him to a speech pathologist in our school district, and she didn’t have concerns at this point. My wife and I have been very blessed with Keagan. With a lot of prayers and the hard work of the nurses and doctors at Children’s Hospital, Keagan can now have a normal childhood and life.

We had help from a family in our community that had a child with a cleft and we would like to give back and be a friend to a family that might be going through what we went through.

Last Updated: Aug 29, 2007