Max’s journey from spina bifida to healthy baby boy

ALLOUEZ, Wis. (WBAY) - A Green Bay-area family is making medical history as they began a journey to give their baby the best chance of not just survival, but someday being able to walk.

The parents spent several weeks in Chicago to become the first people at that hospital -- and among the first in the Midwest -- to undergo a revolutionary new surgery to repair spina bifida on their unborn child.

We sat down with the parents and their team of surgeons who hope sharing their story of sadness turned to joy will help others expecting parents.

When you see baby Max now, at 11 weeks old, you probably have the same reaction everyone else does.

Oh, those eyes!

And that little face!

Baby Max melts hearts wherever he looks.

“He’s a very happy baby. He wakes up in the morning, and he just smiles,” says Max’s mother, Mallorie DeRuyter.

After a very quick labor, Mallorie gave birth to Max DeRuyter in February. He weighed in at a healthy 6 pounds, 5 ounces.

Since that day, mom and dad, Mallorie and Chris DeRuyter, were immediately eager to get him home to Allouez, ready to play with his big sister, Remi, and settle into the normal chaos of life with little ones.

It had always been their goal and dream, but six months ago that felt impossible.

“It all started at the 20-week ultrasound here in Green Bay,” says Chris. “We were really shocked, for lack of a better word, when we found out we had a baby with spina bifida.”

“I was just so devastated that I couldn’t even look at anything,” Mallorie says, recalling the day she received the news.

Their baby’s spinal column hadn’t developed properly, and tests showed a small section of his spinal cord was outside his body in a fluid-filled sack.

“If you would imagine having a zipper on a sweatshirt, instead of zipping it from the bottom up, you would zip it from the top down, so it was zipped about three-quarters of the way down,” describes Chris. “And then the rest of the way, his spine, or the vertebrae of his spine, were open.”

Chris and Mallorie left the doctor’s office that day, uncertain what the future would hold.

“It’s such a scary time, and there’s no information given to you from the start,” says Mallorie.

Chris adds, “They paint a grim picture, kind of, right away.”

Chris turned to the internet for information.

Mallorie went searching for other moms. “I want to talk to real people who have been through this,” she says.

The DeRuyters were referred to specialists in Green Bay, then Milwaukee, and eventually the Fetal Health Institute at Ann & Robert H. Lurie Children’s Hospital in Chicago.

They learned Baby Max would need surgery.

“The disease itself is not curable. Spina bifida is not curable, but the closure has to be done regardless,” explains Mallorie.

Dr. Aimen Shaaban, director of the Chicago Institute for Fetal Health, says, “Our goal is to provide solutions and care in the best possible way for families, and if we can do something like an operation, boy, that sometimes can be a game changer in somebody’s life.”

Chris and Mallorie already knew from research they had options for surgery, including the ability for Mallorie to undergo a procedure while pregnant where doctors could make a large incision in her uterus and repair the spina bifida. It had been done hundreds of times since 2012, according to the doctors.

But then the team of specialists told them about an innovative new procedure, and considered much safer, to repair spina bifida with Max still in the womb.

“We found out they did do the fetoscopic option,” says Mallorie.

“But we were going to be the first ones,” adds Chris.

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At first they didn’t know what to think, but the team of doctors quickly put them at ease.

“We open the mom’s tummy, but we then make little tiny holes in the uterus, about three millimeters, very tiny holes to put our instruments in to do the operation on the inside, and that lowers the cost for mom,” explains Dr. Shaaban.

It’s called fetoscopic spina bifida repair.

In November, Mallorie and Chris left 2-year-old Remi with family and headed for an extended stay in Chicago, anxious but nervous to be the first family at Lurie Children’s to undergo this new surgery.

“It’s the most complex congenital abnormality of the nervous system, so of the brain and spinal cord, that’s compatible with long-term survival,” explains Dr. Robin Bowman, pediatric neurosurgeon at Lurie Children’s. She’s also the director of fetal neurosurgery and director of the Multi-Disciplinary Spina Bifida Clinic.

“That tag team with Dr. Shaaban and Dr. Bowman... we knew Max was going to be in the best hands, really, in all of the Midwest,” says Chris when asked if they were worried about Mallorie being first into the OR for this type of surgery.

Doctors Shaaban, Bowman and Janelle Bolden, a maternal fetal medicine physician, began a six-hour surgery to carefully push Max’s spine back inside his little body and close his skin around that opening.

“The baby probably weighs about a pound and a half at that point in time, so very delicate, very meticulous surgical techniques,” explains Dr. Bolden.

While it’s still such a new procedure, the doctors believe this less invasive method is less risky for mom and baby.

It’s not a cure, but they are hopeful Max will have fewer life-long impacts that can come with spina bifida, like the inability to walk, hydrocephalus or fluid on the brain, and bladder and bowel issues.

“Those aren’t small things. Those are huge things that can make a big difference in the ability of a child to go to school and interact and then be independent as an adult,” adds Dr. Shaaban.

The surgery didn’t come without all kinds of fears.

Mallorie and Chris were told there was a chance Max could be born that day at only 25-and-a-half weeks.

“When I woke up (from surgery), it was like... Okay, what’s going on? Is he okay? Am I okay?” recalls Mallorie.

Then came relief. Ultrasounds and MRIs would soon show Max was improving almost immediately.

“He was moving his legs. He was moving his toes,” says Mallorie, smiling.

Doctors monitored Max closely throughout the rest of the pregnancy, and in mid-February, hours before a scheduled C-section, Mallorie went into labor.

Having the fetoscopic surgery gave her the option for a natural birth.

“They said, we’re going to try, and I don’t think there was any stopping him,” says Chris, laughing.

Max has been persistent, and a fighter, from the beginning.

“He’s done very well after birth. He’s doing great,” says Dr. Bowman.

Max has a dislocated hip, so he’ll wear a special brace for a little longer, but so far, doctors and the DeRuyters are optimistic.

“He’s got full movement in all of his limbs and his toes, and he kicks like crazy when you take this harness off, so they have no doubts that he’ll be able to walk just fine,” Mallorie says happily.

“Being part of that journey, from that diagnosis, from that crisis, to the operation, getting through that, the recovery and to the point now where, again, we’re watching them go back home and putting us in the rearview mirror, that is incredibly gratifying for all,” says Dr. Shaaban.

Chris and Mallorie hope other parents see Max now and know that from the dark times come light and hope.

“I tell them right off the bat. I say diagnosis day is the scariest day. It’s the absolute worst day, and it gets better,” says Mallorie, offering advise to anyone who asks.

“We’re happy that we were able to open a door and pave a new way of doing things,” adds Chris.

“It’s been a long road, but it’s been worth it,” says Mallorie, hugging Max.

Max meets with specialists every few weeks to monitor his progress, and doctors say his first year-and-a-half are the most critical.

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