Mothers and children carry deep bonds, some more obvious than others. Johnna Kerres and her son, Everett, now 5 months old, show theirs in the form of scars.
Last summer, in her 18th week of pregnancy, Johnna was shocked to learn the fetus she was carrying had spina bifida, a neural tube defect in which the spinal column doesn’t close completely.
“It was potentially devastating,” said husband Adam Kerres, 29.
The Rock Island, Illinois couple was initially given a poor prognosis, warned their son could be “brain dead and a vegetable” with extremely low quality of life.
Though she now thinks the doctor was using “very outdated information” about the defect, “it felt like our hearts were breaking,” said Johnna, also 29.
The cause of spina bifida is unknown, and it can have a lifetime of effects on the brain, bowel and bladder function, mobility and learning abilities.
However, the severity of the complications varies widely.
The best-known type of spina bifida involves an opening in the back through which the spinal nerves bulge out.
The lesions are repaired either immediately after birth or, increasingly, before birth through a 3- to 4-inch cut in the uterus.
But, the in-utero procedure causes scarring and means the mother can never have a full-term vaginal delivery.
Despite their initial diagnosis, doctors gave the Kerreses a list of hospitals across the country that offered treatment options.
After contacting several of them, the couple got a life-changing call: Drs. Michael Belfort and William Whitehead of Texas Children’s Hospital in Houston were calling from Whitehead’s kitchen to share more information about the defect and offer hope in the form of treatment.
The doctors developed a method of in-utero surgery involving only two tiny incisions, bringing a much smaller risk of problems for both mother and fetus.
“They gave us a lot more positive outlook, and they gave us a lot of hope,” Johnna said. “Just hearing that [Everett] was going to be okay was a huge, uplifting thing.”
The procedure took only a few hours and “went beautifully,” said Belfort, obstetrician/gynecologist-in-chief at Texas Children’s Pavilion for Women.
Johnna was able to carry to full term and, in September, baby Everett was born.
Less than two weeks later, the whole family was back home in Illinois, celebrating their “very healthy” addition with a photo shoot.
For one picture, Johnna held Everett belly-to-belly in order to show off their scars from the surgery.
“When I look at it, I just think of the journey to get there. I think of the powerful love I have for my son, and I see his strength and resilience,” Johnna said of the photo. “We’ve been so, so blessed. The results have been really fantastic.”
Born in September, Everett is now growing normally, Belfort said, with normal neurologic function.
He doesn’t have the shunt spina bifida patients often require to drain fluid from the brain, and a clubfoot is being treated with orthotics.
He’s even getting advanced ratings in some development metrics such as core strength and ability to push himself upright.
“We don’t know what the very long-term outcomes are going to be,” Belfort said, so the team will continue to monitor his development for at least five years. “This is a lifelong disease. Spina bifida is not something you fix with a single surgery.”
In the meantime, he and the Texas Children’s team continue to develop their new fetal surgery method for other issues beyond spina bifida and are sharing its lessons with health care centers around the world.
The Kerreses hope to use their picture of Everett and Johnna to raise awareness of spina bifida and the medical advances around it.
“People should know that just because someone has spina bifida doesn’t mean they can’t have a good quality of life,” Johnna said. “Whether they have fetal surgery or not, they really can do amazing things.”