When Jeanne and Matthew Mangus were told their unborn child had spina bifida they were given a choice. They could keep the baby or have an abortion.
Jeanne was devastated. The young couple had already lost their first baby, a son born prematurely at 23 weeks. Now they faced rasing a child with severe birth defects.
They decided to face the challenge — not only once, but twice. Grayson, 5, and Gabriel, 2, were both born with the disorder, which occurs in one out of every 1,000 newborns.
Spina bifida is a condition in which the vertebra fails to close at some point along the spine. Many other conditions can also occur with this diagnosis such as bowel or bladder dysfunction, paralysis and lack of sensation below the affected area of the spine. Each of these conditions can lead to its own set of problems including incontinence, impaired renal function, lack of mobility and skin breakdown.
Spina bifida occurs within the first four weeks of pregnancy, before many women are even aware that they are pregnant.
“Both times we found out at 16 weeks when we had the AFP test done,” Jeanne said.
The alphafetoprotein (AFP) test is a screening test drawn from the mother’s blood usually between 15 to 17 weeks gestation. It detects disorders such as spina bifida, Down syndrome and other neural tube defects.
The exact cause of spina bifida remains a mystery.
Some scientists suspect genetic, nutritional and environmental factors. Currently there are only three other families in Arkansas that have more than one child with spina bifida.
“We are pretty rare,” Jeanne joked. “The Baylor University even wants to do a study on us.”
New research studies have shown that insufficient intake of folic acid in the mother’s diet may be a key factor in the development of spina bifida.
“It happens so early that most women aren’t even taking the prenatal vitamins yet when it occurs,” Jeanne said. “The vitamins are usually prescribed at your first doctor visit and by then it’s too late.”
Like other children with spina bifida, both of Jeanne’s boys were also born with hydrocephalus, or too much fluid on the brain. Doctors had to implant a shunt to drain the extra fluid. The shunt will stay in place their entire lives.
“You really have to learn how to care for a child who has special needs,” Jeanne said. “That is why I am so grateful to have an agency in Batesville like the Pediatric Day Clinic.
“Grayson stayed with them until he started kindergarten this year and Gabriel goes there, too,” she continued. “It was such a relief to know there were nurses and therapists there as well as teachers to take care of my sons.”
Now Grayson attends school at the Cord-Charlotte Elementary campus of Cedar Ridge School.
“And he’s just your typical kindergarten kid,” Jeanne said.
“His upper body strength is amazing,” she added. “He transfers all by himself from his chair to his desk.”
Despite everything, kids with spina bifida can lead relatively active lives compared to just 20 years ago.
“The No. 1 cause of death in affected children used to be renal failure,” Jeanne said. “Because of the lack of sensation they don’t completely empty their bladder and that can lead to problems.”
Jeanne uses an in-out catheter for both boys on an average of eight times a day to make sure this doesn’t happen.
With adjustments such as those, Jeanne said her sons can have a normal quality of life and she goes out of her way to make sure they get to experience the same things other children their age enjoy.
“We’re thankful for the small things,” she said. “It may not be a big deal for you or I to walk across the room but Grayson was able to do that for the first time, just the other day.
“We celebrated,” she added softly.
The most important thing to Jeanne and Matthew is that they don’t disable their children further.
“We are raising them to be independent and to find out what works for them,” Jeanne said.
“We’ve told Grayson and Gabriel there isn’t anything they can’t do, they just have to make adaptations sometimes,” she continued. “Spina bifida will not be the most interesting thing about our sons as they grow up. We can’t predict just how far they will go.”
