GRANDVIEW, Mo — A Kansas City toddler defied great odds after undergoing a trailblazing surgery for a neural tube defect known as spina bifida.
2-year-old Wesley Londo’s mother, Paige Londo, learned during her 20th week of pregnancy after an anatomy scan that her baby had spina bifida, a birth defect that affects the spinal cord.
Babies with spina bifida can have severe disabilities, including altered brain development, decreased ability to move the lower body, difficulty walking, challenges with excretion, and hydrocephalus, or a buildup of fluid in the brain.
It is the second most common major birth defect next to cardiac disease. While not a genetic disorder, certain genetics do increase the likelihood of causing spina bifida.
“We had done everything we were supposed to do,” said Londo, a first-time mother with a son dianosed with spina bifida.“ With the little knowledge that we had at the time, it was almost a little overwhelming.”
Londo says uncertainty about Wesley’s future was their biggest fear, but God showed them the way. His doctors in Kansas City referred her and her husband, Cody Londo, to Barnes-Jewish Hospital in St. Louis.
There, Londo and Wesley were the first patients at the Fetal Care Center at Barnes-Jewish Hospital to qualify for a trailblazing fetoscopic repair of spina bifida. It is a much less invasive option of the procedure and decreases the risk of preterm delivery and future pregnancy complications.
“It is really scary to be the first, for sure, but they seemed really, really confident. And I know that they were. They really wanted it to go well just like we did,” said Londo. “The fact that, you know, we just happened to meet all their perfect criteria for their first patient, it was just like a sign to me and Cody that it just, it felt right.”
The Londo’s took a chance at 25 weeks and the surgery was a success.
“We were so happy to be able to offer this to them,” said Associate Director of the Fetal Care Center at Barnes-Jewish Hospital, Dr. Kathy Bligard. “Paige didn’t have to get on an airplane, didn’t have to, you know, completely uproot her life to be able to pursue this care for Wesley.”
The fetoscopic option of the repair procedure is only offered at several hospitals across the nation, and only at Barnes-Jewish Hospital in the Midwest region.
“If we can do that while the baby is inside the uterus, we can actually improve outcomes." Bligard said. "We can decrease the rates of hydrocephalus, or that water on the brain, and we can improve the chance that a baby is going to be able to walk independently. It decreases the rate of needing a procedure to drain fluid from the brain by 50 percent, and it improves the likelihood of babies being able to walk — it doubles it.”
Once a family has had a child with spina bifida, there is about a four percent risk in future pregnancies of having another child with the defect.
Londo, now pregnant with her second child, increased her intake of folic acid as a layer of defense.
Despite the challenges of her son’s medical journey, Londo is glad she and her husband took the chance on a newer medical procedure to give their son the best chance at a healthy life.
“Wesley might not have been walking, you know, doing the things that he’s doing if we didn’t have this opportunity,” said Londo. “He’s just such a miracle to us.”
To pay her gratitude forward, Londo now takes to social media to tell Wesley’s story and share knowledge.
“I’ve had so many moms or dads that have reached out to me,” said Londo. “The surgery was so life-changing for Wesley, like, if I can help anybody feel like they can do the surgery, I definitely want to do it.”
Her message to other families walking a similar path is to find a support system and lean on them.
“It’s not your normal life, but you figure it out," Londo said. "I mean, it’s your kid, so you do whatever you have to for them. The beginning is the scariest. It definitely gets better and…. it definitely gets better.”
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