Boy with spina bifida fights to walk (Video)
Nov. 3, 2012 at 6:03 a.m.
Updated Nov. 4, 2012 at 5:04 a.m.
WHAT IS SPINA BIFIDA?
Spina bifida means cleft spine, which is an incomplete closure in the spinal column.
An average of eight babies are born every day with spina bifida or a similar birth defect of the brain and spine.
Spina bifida occurs when the baby's spine fails to close during the first month of pregnancy, often before most women even know they are pregnant.
As the spinal column and brain are formed, an opening, or lesion, on the spinal column is created.
CAN IT BE PREVENTED?
Which parts of the body are impaired, and how much, depends on the area of the spinal cord that is affected. No one knows for sure what causes spina bifida. Scientists think that genetic and environmental factors act together to cause the condition. Currently, 166,000 Americans live with some form of spina bifida.
Source: Spina Bifida Association of North Texas
Aden Chapa sat on his knees, watching cartoons, while his dad relaxed on the couch, watching him.
At one point, to distract Aden, 5, from the television, his dad, Marcus Chapa, asked him what he wanted to do for the weekend.
Before responding, Aden crawled to the edge of the couch for support, got up and ran toward his dad. It was just one of the few times Aden has stood up.
Aden, who lives in Placedo, suffers from spina bifida, a common birth defect that damages the spinal cord when it fails to close properly during early stages of pregnancy.
Though surgery can repair the spinal cord, the nerve damage is permanent.
People who have spina bifida need assistance to walk.
Aden, however, learned to walk in October after practicing with his dad and aunt. Chapa said that when they would go out, Aden would see others walking and running. Though he was still using a walker when he was young, it took Aden two years to learn to walk.
"He does well when he has shoes on," Chapa said. "I cried when he started walking."
Aden would use his hands to pick himself up from the floor, but they were bent inward. He also suffers from Vater syndrome, a disorder newborns have when their body parts don't function.
When Aden was born, he had three lungs, Chapa said. He was also born without a thumb, but later had his index finger shifted to become a thumb. Though surgery was later done to fix Aden's hands, it is unlikely they will ever be normal.
Chapa and his then-girlfriend understood the problems their son would have.
"Five months into the pregnancy, they said that we should terminate it," Chapa said. "I couldn't do that."
After birth, Aden stayed in the hospital for a month for surgery to repair his back, which has left scars. Chapa said that he was with his son every day.
"I got laid off due to being in the hospital every day," he said. "It was the longest time of my life."
Since birth, Aden has endured 13 surgeries, most of which have taken place in Galveston, about three hours from Placedo. He is scheduled for five more surgeries during the next few years. Paying for them may be a challenge.
Chapa, who works as a contractor for Palacios Marine Industrial, does not have health insurance that covers all of Aden's medical expenses.
Aden has a doctor in Victoria, who his dad said is the only doctor in Victoria willing to treat Aden's conditions.
"If he ever had a major problem, I would have to take him to Galveston," Chapa said.
For Cathy Delaney, travelling to find treatment for her son, Jason, was not as far.
Living in Katy, Delaney traveled to Houston to take Jason to the one of two clinics that specialized in caring for patients with spina bifida.
Jason, who is now 23, sees a doctor for regular checkups nearby and is not too far from a major medical center.
But others who have this condition aren't so lucky.
"It's extremely difficult to find your own care," said Delaney, a board member at the Spina Bifida Association of Houston Gulf Coast. "Once they get through the pediatric stage, you have to go to each specialty (doctor) to find out who could care for you."
Finding care is a difficulty thousands of Texans living far from major cities must confront.
According to the Spina Bifida Association, 8,709 people with spina bifida live in Texas, but there are only 12 clinics in the state that care for these patients. And not all of these clinics serve both adults and children.
Dr. Gary Bobele, a pediatric neurologist at Driscoll Children's Hospital in Corpus Christi, which cares for children with spina bifida, explained that specialized care should be more available.
Bobele said he hopes that health care for a variety of conditions, like spina bifida, improves as health care funding and legislation continues to advance.
Chapa also has had difficulty finding a place for Aden to go for day care. Aden is a kindergartner at Placedo Elementary School, but prior to that, Chapa tried to put him in several day cares in Victoria. They all refused to take Aden because they couldn't provide for him.
So instead, his aunt Jessica Arias took care of him. There were, however, some complications.
"If we go anywhere, we have to limit what we do because he gets tired easily," Arias said. "There are some setbacks, but nothing I think twice about. I do it because I love him and he's my nephew."
In school, Aden is doing well academically, his dad said. Aden also gets involved athletically. He recently participated in T-ball, and hopes to get involved in soccer, but the chances are unlikely because he just started walking, Marcus said.
For now, Aden focuses on pleasures such as candy. For Halloween, he dressed up as a Power Ranger Samurai. Halfway through trick-or-treating, Aden got tired, so his dad carried him most of the day.
"Every house he saw he wanted to get candy," Chapa said. "He had a blast."