Myleomengicele Spina Bifida with Hydrocephalus
My son Ryan was born on August 14, 1993. He had a birth defect called Myleomengicele Spina Bifida with Hydrocephalus. Days after Ryan's birth we saw doctors, nurses, psychologists and genetic counselors, and a at one point a social worker suggested that we institutionalize him because he would most likely be in a vegetative state for most of his life.
We had Ryan moved to St. Joe's Medical center 2 weeks later and soon found out his Pediatric Orthopedic Specialist was Dr. Avella. When my husband and I brought Ryan to see Dr. Avella I remember becoming so emotional, as I did with each specialist, but this time it was different. My first question to Dr. Avella (which I now know was so unfair to ask) was, "Dr. Doug, please tell me that Ryan will walk." Despite my tears he answered so honestly, "I can never promise that, but I do promise that I will give Ryan the best medical attention I can, as if he were my own son."
Our visits with Dr. Avella occurred every six weeks in the beginning. And at each visit he would x-ray Ryan's hips and spine. In 1995, Dr. Avella ordered Ryan to be fitted for long braces and a walker. Ryan did great but after some time it became to laborious for Ryan and he chose a wheel chair. Dr Avella worked closely with the therapist and wheelchair representative to make sure that Ryan was comfortable, going beyond what other doctors would do. As time went on, Ryan was even able to get on his hand propelled bicycle and ride with the other children in the neighborhood every day.
Ryan had multiple surgeries with Dr. Avella to improve his hips and legs but in November 2008 Ryan's scoliosis (from the Spina Bifida) became so severe that Dr. Avella began talking about an additional extensive surgery because he was concerned that the curve was compromising Ryan's heart and lungs. At 14 years old, Ryan did not want to even entertain the thought of a 12th surgery. We made adjustments to his wheelchair, sought treatment from a chiropractor and worked hard at Ryan's physical therapy sessions. Remarkably, this worked and we learned that Ryan's heart and lungs were not affected from the scoliosis.
Ryan went for his 6 month check up several months ago and Dr. Avella declared him skeletally mature! When we were leaving we talked about Ryan turning 18 later this month and how we want to stay with Dr. Avella. He told us that we could as long as we would like to & I know we won't be leaving Dr. Avella anytime soon. Our insurance plan doesn't cover Dr. Avella as in network but you can't put a price on the most fabulous medical care that an individual can give to your child!
Ryan is now 23 years old. After graduating with his BA in broadcasting from Montclair State University, Ryan began his full-time career with MLB network in Secaucus New Jersey. In November 2016, Ryan earned his first Emmy as associate producer working on the 'MLB TONIGHT SHOW'. He has been an MLB network for three years and is enjoying his successful career.