Where Do You Live?
Mooresville, North Carolina
Tell Us About Your Family…
Dave and Melissa have been married for 21 years and moved to NC from Austin, TX a year after getting married. They have two children – Melanie, age 19 and Trevor, age 15. Melanie is a rising sophomore at East Carolina University, and Trevor will be a sophomore at Mooresville High School. Trevor was born with spina bifida and has had 27 surgeries – almost all Levine Children’s Hospital/CMC Main. Trevor enjoys Marvel comics and movies, playing accessible baseball and attending Hornets and Panthers games. Trevor loves the hospital and he and his sister are founding members of Levine’s Teen Advisory Council. Due to her exposure to Levine Children’s Hospital and it’s impact on her brother, Melanie is a Child Life major at ECU. Dave works in children’s ministry at a large church in Mooresville, follows the Hornets, Panthers, and NASCAR. Melissa is an executive with a hardware manufacturer and is often on the road around the US and overseas.
How Has Spina Bifida Impacted Your Family?
There are two primary impacts that SB has had on our family. The first is that it has made us aware of the struggles of the disabled community. We try to do as much as possible but there are many things we/Trevor cannot participate in because he is a full time wheelchair user. One of the biggest is his inability to go over to many friends’ houses because their yards and entryway are not wheelchair friendly. When we travel we need to make sure to reserve an accessible room and know how to find accessible transportation. Along these lines we are also very aware of the struggles families have with finding adequate care and medical supplies. We have lobbied the US Congress on behalf of families with chronically ill children.
The second impact to our family is all of the opportunities we have been offered because of Trevor’s disability. We have been to Hollywood on a Make-A-Wish trip, been the guest of teams at sporting events, and given fast access to ride at amusement parks. We have spent hours discussing all of the things that we have been able to do because he has spina bifida.
How Do You Participate In Your Community?
We are very community oriented. All four of us are involved with our church and enjoy the fellowship it offers. Trevor is in his fourth season of accessible baseball at the University City Y’s Miracle League. We all volunteer our time at events and fundraisers for Levine Children’s Hospital and other organizations. We also enjoy attending sporting events.
What Would You Tell A Local Family With A New Diagnosis?
Simply stated, I would advise them to take a deep breath, keep their eyes and ears open, and write everything down.
Children born with spina bifida are chronically ill because their condition generally requires frequent surgeries and continual care. Parents that are new to having a child who requires more than typical care can easily become overwhelmed. Their child’s well-being is dependent on their ability to cope with the new demands. Being overwhelmed will also make it difficult to understand what is going on with the child, which leads me to my second point.
Kids born with spina bifida generally have a handful of doctors and a couple of therapists. Spina bifida is often diagnosed before the baby is born. We found it very helpful to find a pediatrician that had previous experience with SB, meet with that doctor to find out what we should expect, and get referrals to specialists and meet with them. Doctors and their nurses will rattle off diagnoses, instructions, and plans of care. Write all of this down so that you can research it later. Keeping an up-to-date record of surgeries, medications, and other info is important. Doctors and hospitals have improved their electronic record keeping over the years, but it is important to keep this information up to date because not all offices and medical systems are linked. Social media also offers a way for parents to ask questions and seek advice from other parents.
Spina bifida is a common birth defect. Doctors in and around larger cities should be familiar with it. With that said, spina bifida is considered a “snowflake” condition because children with a very similar defect can have a large variety of disabilities. At a pre-birth diagnosis a doctor may guess that the child will never walk or have any number of other problems. They really do not know. Another parent on an internet discussion group may give advice that is never needed. However, by talking to other parents, a parent may find out about another doctor offering a new treatment or about a special benefit through an organization.
I would also advise parents to seek out and be open to the generosity of others. Many people out there are sympathetic to disabled children and their families and they enjoy celebrating the children. We have been guests of professional athletes and sport teams at sporting events where we got to meet and interact with the players. Trevor has met many of his favorite actors and personalities. Our family has spent weekends at a camp designed for children with special needs. When Trevor was born, the Sunday School class of one of Melissa’s coworkers took up a collection and gave us a nice cash gift because they said “that’s what our Sunday School class does”.