At their 19-week ultrasound, first-time parents Joni Reinkemeyer and Chris Skain were hoping to find out the gender of their baby to share at a reveal party planned for that weekend. The ultrasound technician confirmed that Joni was having a boy. But that wasn’t the only news Joni and Chris received that day. And, what her doctor shared wasn’t good.
Joni and Chris’ baby had myelomeningocele, a severe form of spina bifida. In babies with this condition, the spinal cord and nerves develop outside of the body and are contained in a fluid-filled sac that is visible outside of the back area. These babies typically have weakness and loss of sensation below the defect. Problems with bowel and bladder function are also common. The sooner the spinal cord is put back in place and the hole created by its protrusion is closed the better it is for the baby.
Joni’s doctor recommended the Jefferson City couple have their baby in St. Louis to be near advanced fetal care and the sophisticated newborn intensive care unit (NICU) at Children’s.
Here, they were presented with options. They could choose to have the baby undergo surgery soon after birth, risking further development of the condition. Or, to Joni and Chris’ amazement, they could participate in the first in-utero spina bifida surgery at Barnes-Jewish and St. Louis Children’s hospitals. They were told that findings from a Management of Myelomeningocele study (MOMs), published in the New England Journal of Medicine in 2011, prove that fetal surgery may improve neurological outcomes.
They chose the in-utero surgery.
“Being able to avoid brain surgery on our newborn and increasing his chances of walking were all big factors in our decision,” Chris says.
On October 10, 2017, when Jackson Skain was 25 weeks along in his fetal development, Michael Bebbington, MD, MHSc, along with a team of 35 specialists, performed the surgery. The new director of the Fetal Care Center of the Barnes-Jewish, Children’s and Washington University School of Medicine, Dr. Bebbington had participated in the MOMs clinical trial when he was at the Children’s Hospital of Philadelphia.
Joni slowly recovered from her part in the surgery, which involved a large incision for doctors to be able to reach the baby inside her uterus. Then, 10 weeks after Jackson made his debut, he came into the world once again.
Next stop: the NICU, a journey that just became much shorter for new moms and their babies, thanks to the new Women & Infants Center at Barnes-Jewish Hospital.
“We never thought we would have a baby in the NICU,” Joni says. “But then we never thought we’d have to perform surgery on that baby even before he was born.”
Quickly, the NICU staff put to rest all of Joni and Chris’ fears about being there. “The NICU was not as scary as we thought,” Joni says. “The doctors and nurses took time to thoroughly explain what’s going on and what the next steps were. They helped us gain confidence that we could take care of him.”
They were able to test their new skills on New Year’s Day, when they brought Jackson home.
“It was a long journey, and there are many hurdles left to cross, but it’s all worth it,” Joni says.