ACPA Family Services

Cleft-Craniofacial Community Stories

The Harbaughs’ Story

Our Story
By Jim and Miah Harbaugh

When we were asked to share the story of our son Jimmy it was hard to know where to begin. Jimmy is now five years old and seems like any other happy, healthy preschooler, so it is easy to forget that he was born with a cleft palate. Along the way there have been struggles but fortunately, for each hurdle that we have encountered there has also been a positive outcome. In looking back over the past five years we realize that, for us, what helped the most is not only the great doctors that Jimmy has had but also the team care approach that they use.

Probably one of the most emotionally trying as well as joyous times for us was the day that Jimmy was born. He arrived a few weeks early, and he was breech. This was of some concern, but we were totally unprepared to learn that he had a cleft palate. We felt so unsure and afraid because we didn’t know anything about this birth defect. The day after Jimmy was born, the surgeon who would eventually repair Jimmy’s palate came to our hospital room. This meeting still stands out vividly in our minds because it changed our attitudes so much in a short amount of time. Our uncertainty and fear were replaced with knowledge of our son’s medical condition and the comfort that there were people to help him. We realized very early on that we were not alone. We did not have to worry over what to do and when. The plan was already in place.

Our surgeon and the rest of the cleft team that we would eventually be introduced to really proved to be the most valuable resource that we had. Even in the first few days that we had Jimmy home from the hospital, we were looking for assistance with feeding. Although we were experienced parents of an older son, we had never fed a baby with a cleft before. We contacted a nurse practitioner that was part of the team, and she gave us as much of her time as we needed. She explained everything in detail and worked with us until we felt confident. When we were uncertain about Jimmy’s hearing, he was seen by anENT who worked as part of the team. Jimmy had ear tubes put in when he was about four months old. In Jimmy’s first year it seems like we constantly used the resources of our cleft team.

At fifteen months old Jimmy was ready to have his palate surgically repaired. Although having a child undergo surgery brings with it a certain amount of anxiety, it was, for us, also a very happy day, as strange as that may sound. We were very thankful that he had something that could be fixed through the miracles of modern medicine. By this time, also, we had known the doctors involved in the surgery for over a year. We knew that our son was in the best possible hands.

Jimmy recovered wonderfully from his surgery. Later that year we had to move as we have several times since. In each place we have found a hospital with a cleft team to continue his care. He began speech therapy almost as soon as he was talking and continues with that still today. It has really helped him, not only with the clarity of his speech, but with his social skills as well. As his speech has improved and others can understand him better, he has become much more talkative and even somewhat of a singer lately!

Jimmy had another surgery late last summer to improve his speech and the appearance of his mouth. We returned to his original cleft team even though we were no longer living in that state. The inconvenience of traveling for a surgery was far outweighed by the benefit of returning to the same doctors. Once again everything was a success. His speech has improved greatly and he certainly couldn’t be more handsome.

Now that he is older and understands more of the medical treatment, he is beginning to take more of an interest in it all. He occasionally talks about being a doctor and has requested a medical center from Santa for Christmas. His baby sister recently had surgery, and he was very sweet to her. He sounded like the seasoned professional telling her that everything would be fine.

Children with clefts go through much more in their first few years than most people have to endure in a lifetime. For our son it has certainly made him the person that he is today.He is tough beyond compare, yet at the same time one of the sweetest and most special little boys that we know. Our story, thankfully, is a very happy one. We were blessed not only with a wonderful son in Jimmy but also by the doctors that have helped him.