Kevin's Experience with the GBMC Cleft Lip and Palate Team has been nothing but positive. Our son, Kevin, was born on April 8, 2004 following an uneventful pregnancy. Much to our surprise, Kevin was born with a cleft palate. My younger brother was born with a cleft lip and palate so my husband and I were familiar with the defect. Knowing what we faced as a family helped soften the blow. However, we still had concerns regarding surgeries, speech issues, hearing problems common to cleft-affected children and feeding difficulties.
Within 24 hours of his birth, Dr. Kline and Dr. Capone came to our hospital room to discuss Kevin's treatment plan. Both doctors put us at ease as much as possible during these early days with Kevin.
Team social workers also came in to meet with us.Kevin did initially have problems drinking from a bottle. We tried several different bottles, nipples, and feeding positions. Kevin had numerous weight checks in his first few weeks of life as he ate slowly and little and was not gaining weight as quickly as he should. Through a process of trial and error we found the bottle that worked best for him.Additionally, Kevin had recurrent ear infections. We expected him to get ear tubes at about 6 months, but after several ear infections, a problem frequently faced by children with cleft palate, Dr. Capone recommended placing the tubes earlier. Taking my baby in for surgery, even a minor procedure, was emotional and scary, but Dr. Capone once again put us at ease and was on hand in recovery to answer any questions we may have had. Kevin's ear infections stopped and he did very well in the months leading up to his palate repair.
Generally, palate closure is done around the first birthday. We requested the surgery be performed closer to 11 months to allow Kevin sufficient time to heal prior to his first birthday so he could enjoy cake and ice cream at his party. Dr. Capone accommodated that request and Kevin had his palate repair surgery at 11 months.
A much longer and complicated surgery than the tube placement, this was a hard day for us. As we waited
during the 3 ½ hour long surgery, we were given frequent updates and brought to the recovery room as soon as possible. Again, Dr. Capone, the team, and the hospital pediatric nurses, were wonderful. During the healing process, Kevin had to wear arm restraints for several weeks and be on a liquid diet. It was difficult, but he thrived and has not needed additional surgeries to date.
Kevin received in-home speech therapy for two and a half years through a county agency in Pennsylvania. He continues to have annual check-ups with the team, which include examinations by specialists in audiology, speech and language pathology, nutrition, social work, pediatric oral maxillofacial and facial plastic surgery, otolaryngology, pediatric medicine and genetics. Being able to visit with all of the specialists involved in Kevin's care in one location on the same day is great.
With the exception of some minor speech issues, Kevin is doing very well. He is a typical little boy who loves playing with his friends, going to pre-school and playing soccer. Dr. Capone and the team have always been accessible and more than helpful. Their support has been invaluable. It has played a huge role in how well Kevin has fared in spite of his birth defect.