At a routine prenatal exam and ultrasound, Melissa’s OB was having trouble seeing all of the landmarks of our unborn son, so we were sent down to the Women’s Institute for a level II ultrasound. It was during this visit we were told our son has spina bifida. We were not familiar with spina bifida but were told his defect did not appear to be too severe. We quickly immersed ourselves in books about this common birth defect and began to meet with the various doctors that would work with us to care for Trevor.
Trevor was born via c-section on December 11, 2000 in the high-risk OB unit and spent the following 10 days in the NICU. The night he was born he had surgery (#1) to close the defect in his back and a month later he had his first shunt installed. He has had surgeries to help correct his neurogenic bladder and manage his bowels as well as some typical surgeries such as an inguinal hernia repair, a strabismus (lazy eye) repair and dental surgeries. All told he has had over 20 surgeries. A few have been at other hospitals at the doctor’s request but our experiences were not as good as those at CMC and now LCH. Trevor looks forward to his visits to LCH – even surgeries, as long as he can go to the playroom.
A number of Trevor’s surgeries have been to improve his quality of life and help him to be more typical. He has a Malone antegrade continence enema to help manage his bowels. Without it, he would have the unpredictable bowel control of an infant. With it, he is able to clear his bowels daily with little chance of an “accident.” His two most recent surgeries have been orthopedic. The first was to release tendons in his legs to correct contractures that had developed over the years. The contractures made it difficult to move around and get dressed. He also had surgery to straighten a severe scoliosis curve that was beginning to affect his breathing and ability to sit up.
Trevor is now known by name by many of the 10th floor staff of LCH and all the Child Life staff. Due to our frequent stays on the CMC 7th floor, we were asked to speak at a Child Life meeting in March of 2007. We were more than pleased to let them know how important their work was to our son and to us.