Imagine being told at a routine ultrasound your baby has a serious birth defect, then doctors tell you they can operate on your unborn child by entering the womb weeks before you deliver. It’s an intervention changing the course for babies with spina bifida — and their brave parents, parents like Mallorie and Chris Deruyter.
“We found out at our 20-week ultrasound that he was diagnosed with spina bifida,” Mallorie Deruyter said. “I had heard of it, but I didn’t really know what it was so at that point it was really scary.”
Their baby had a congenital defect. His spinal cord exposed through an opening on his back.
Their doctors in Wisconsin passed the family to Lurie Children’s, where a highly specialized team of experts offered the couple a procedure unlike any other.
Fetal neurosurgeon Dr. Robin Bowman was part of that team.
“Prior to the in-utero surgeries this surgery would happen after birth,” she said.
“My first thought was ‘I didn’t even know they could do that,” Chris Deruyter said.
What Dr. Aimen Shaaban and Bowman do is perform surgery on a developing fetus, typically at 25 weeks along in the pregnancy. But what once required a large incision in the uterus to expose the unborn baby — and carried long-term risks — can now be done much less invasively with smaller incisions and instruments to make the repair.
Still, it’s a delicate procedure that can lead to immediate, premature delivery.
“When I initially heard that, I actually thought there’s no way I’m going to have surgery. I just thought it was absolutely crazy,” Mallorie Deruyter said. “And then the more research I did the more I realized this is going to give him the best life.”
“I was very impressed with the strength she had to make that decision because it could have negatively affected her in a lot of ways, too,” Chris Deruyter said.
Last November, Mallorie Deruyter became the very first mother at Lurie Children’s to undergo what’s called a closed fetoscopic repair.
“It was pretty scary because they lay it all out there for you and tell you all the risks that can happen, including delivering at the time of surgery, so delivering your baby at 25 weeks,” Mallorie Deruyter said. “It was a pretty scary thing. We wholeheartedly trusted them and knew they would do everything they could for both of us.”
Bowman described the procedure to WGN’s Medical Watch team. It starts by opening up the belly and exposing the uterus.
“We’re still opening the mother’s abdomen either horizontally or between the belly button,” she said. “And then we enter into the uterus with a little needle.”
As Mallorie Deruyter rested under general anesthesia, the surgeons inserted two ports for their instruments and a third for a camera to view the defect on the baby’s back.
“You can see the skin opening … and the spinal cord … Sometimes it’s completely flat, other times the spinal fluid will push up the coverings and the spinal cord and it will almost look like a bubble or a cyst on the baby’s back,” Bowman said.
The surgeons use their instruments to dissect the tissue.
“The baby is monitored throughout the entire procedure, and the baby is actually very stable,” Bowman said. “As we free the edges of the spinal cord, it is going to untether the spinal cord so it relaxes back down into the spinal canal. And you want to close it back into a tube, into a spinal cord and then close the coverings to hold in that spinal fluid and then close the skin.”
“I was worried about the health of my baby. I was worried about the health of my wife,” Chris Deruyter said. “Even though it was hard for us and hard for mom, we wanted to do what was best for him and gave him the best chance of success in life.”
After seven hours in the operating room, there was success.
“It was definitely strange waking up because at that point I had no idea what happened, how the surgery went, if he was born even, I had no idea,” Mallorie Deruyter said. “So waking up and hearing everybody around me and finding out that everything went really well and that I was doing good and baby was doing great, it was just amazing.”
The Deruyters were able to spend the holidays at home but returned to Chicago closer to their due date so their fetal surgeons could monitor the baby after delivery.
“I was scheduled for C-section at 39 weeks, and that morning I went into labor,” Mallorie Deruyter said. “And that was about 1 a.m. I got to the hospital and he was born just before 3 a.m., so he came really quickly. And he just came on his own. He didn’t want to have a c-section.”
Back home in Green Bay, and after Baby Max had slept 11 hours through the night, Chris, Mallorie and big sister Remi showed off their healthy, newest addition to the family.
“The chance of a really normal life for him really looks apparent,” Chris Deruyter said. “You can see he’s going to be a thriving, happy young little boy. I don’t think we would have done it any other way.”
You think as a mom you would do anything for your kids. And this isn’t something you really ever think you’d have to do, but I’m really happy I could do it for him.Mallorie Deruyter
The Lurie surgeons plan to follow Max and all the babies who undergo the fetoscopic procedure for years to come, tracking their progress compared to the more traditional procedures for spina bifida. So far, studies show the earlier intervention is more beneficial.