Janice Skinner was just like any other first-time mom; excited to welcome a new life into the world and also a little scared of what was to come. But 10 days before her first baby was born an extra level of fear was added when Janice and her husband David learned their newborn baby boy would be born with spina bifida.
Spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings. It occurs at the end of the first month of pregnancy when the two sides of the embryo's spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back.
“When Justin was born, the bulge in his back looked like the yolk of a sunny-side-up egg, but it was gray,” says David.
As soon as Justin was born at Miami Valley Hospital, he was taken by the neonatal transport unit to the Regional Level III (B) Newborn Intensive Care Unit (NICU) at Dayton Children’s where he underwent his first surgery. The doctors pushed the spine back into the vertebrae and closed the hole to prevent infection and protect the spine. Because Justin also had hydrocephalus, or water on the brain, three days after his first surgery he had an operation to place a shunt in the brain. The shunt is a thin tube that helps to relieve pressure on the brain by draining and diverting extra fluid.
“When we first found out Justin would have spina bifida it was a little scary because we had no idea what it was,” says Janice. “During our time in the NICU, one of the nurses had a daughter with spina bifida. It was very comforting because she was able to set our minds at ease and let us know what to expect.”
Justin spent two weeks in the NICU recovering from his surgeries. During this time Janice and David met with a team of doctors and nurses to learn how to care for a child with spina bifida. Each of the pediatric specialists that Justin’s care would require was on site making it easy for the Skinners to manage and understand his care.
During the first six months of his life, Justin underwent six different surgeries. When he was 18 months old, he was treated for severe hip dysplasia which involved a hip shelf surgery and a triple muscle transfer. This took three different surgeries and required him to be in a full body cast for 18 weeks. The Dayton Daily News featured Justin in his full body cast to profile spina bifida as part of a health awareness day. The article focused on the Skinner family as a strong advocate for encouraging women of childbearing age to take folic acid supplements to decrease their chances of having a child with spina bifida.
After these surgeries, Janice and David had to adjust to having a toddler around the house who couldn’t participate in normal toddler activities due to his body cast.
“While he was in the body cast I knew we had to get creative and figure out ways to keep him entertained and engaged,” says Janice. “We played a lot of mind games, did crafts and went to the park. We even put a pillow on a wooden board with wheels so that he could push himself around. “
For most parents, seeing your child take their first step is a very big milestone. David and Janice were no different and were very excited that once Justin came out of the full body cast he was given a walker so he could begin to learn how to walk. However, they quickly realized that even due to his condition, Justin would still be a handful like most toddlers when they begin walking. He was soon switched to crutches because he used the walker as more of a toy to speed down the hallway. He began using the forearm crutches when he was 3 and got his first wheelchair when he was 10.
In 2008, Dr. Kleiner performed a third ventriculostomy surgery on Justin that took the place of his shunt and made him shunt independent. Because Justin had had so many issues with his shunt before, this surgery was extremely important for Justin as it eliminated the need for shunt revisions and limited the unhealthy pressure on his brain.
Throughout his life Justin has had more than 30 surgeries, but most of the time he is doing just fine. If no other complications arise, Justin visits the myelomeningocele clinic at Dayton Children’s once a year. This gives him and his parents a chance to see all of his specialists in one visit including orthopedics, neurosurgery, urology, developmental pediatrics, dietetics, and occupational therapy.
“Not having to go to five or six different appointments is extremely convenient. We are able to come and get it all out of the way in just half a day. The doctors work together as a team and make sure to provide the best care for Justin” says Janice.
“Justin is a charming, friendly and enthusiastic young man,” says Eileen Kasten, MD medical director of developmental pediatrics. “As he moves on to college he will continuously need to consider how to work around his ambulatory and medical requirements and fit them into the typical schedule of a college student and young adult. Justin and his family will face those challenges with strength and a positive attitude. Medical issues have never stood in his way as he moves through life.”
Today Justin is an extremely active teenager and has never let his wheelchair or crutches get in the way of something he wants to do. He has tried nearly any sport that he could including baseball, soccer and tennis. However his real love is wheelchair basketball. Justin plays for a varsity team, the Turnstone Flyers, out of Fort Wayne, Indiana. He has even had the opportunity to play against some of his doctors for a fundraising wheelchair basketball event.
“I like playing basketball with the doctors such as Dr. Kleiner and Dr. Albert. Even though our team beat them, Dr. Albert was actually pretty good,” says Justin.
Justin also stays active in school by playing the French horn in the concert band. This year he will add one more activity to his schedule as he becomes an ambassador for Dayton Children’s. He will have the chance to share his story with others and tell them about the care he has received here.
“Justin has a great attitude and a desire to include others with disabilities and encourage them to also have a great attitude. He LOVES encouraging others, especially persons with disabilities, to participate in some way in sports activities, not just for the health benefits, but as much for the social aspects. He has been a model for his peers in this regard and this is why he will make a great ambassador,” says Kasten.
“I’m really excited to be an ambassador. I’ve never been mad about having spina bifida. It’s my normal and Dayton Children’s is pretty much my second home,” says Justin. “I’m looking forward to easing other kid’s anxieties about coming to the hospital. I want them to know that everyone is really friendly and they talk to the patients and not just the parents. I love this hospital!”
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