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How a young girl with spina bifida made medical history...before birth

Doctors with Allina Health and Children's Minnesota have taken another step forward in fetal surgery, with an assist from Stella Baty and her mom.

MINNEAPOLIS — October is Spina Bifida Awareness Month, which means it's a great time to celebrate the extraordinary story of Stella Baty.

Stella made Minnesota medical history by becoming the first patient to receive a new kind of procedure to fix a serious birth defect. 

And it all happened before she was born.

"We were totally unaware about Spina Bifida until our daughter got diagnosed, in utero," said Stella's dad, Jeffrey Baty.

Kinzie Burnham was just 18 weeks pregnant when her doctors in North Dakota discovered the potentially life-altering birth defect.

Spina Bifida is the most common birth defect impacting the central nervous system, affecting 1 in 3,000 births. 

Stella was diagnosed with a potentially severe case, not only impacting the spinal cord, but also causing fluid buildup in the brain that threatened to lead to both physical and intellectual disabilities.

"I broke down," Jeffrey said. "I started crying and I'm not that kind of person. (Kinzie) was the strong one."

"The adrenaline in my body was like, okay, it's my turn, I'm a mom now," Kinzie said. "I have to step up and be a mom."

That meant taking the advice of her doctors and traveling from Bismarck to Minneapolis, to seek care from the Midwest Fetal Care Center, which is a unique collaboration between Allina Health and Children's Minnesota.

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"The injury gets worse and worse over time," said Dr. Joseph Lillegard, a fetal surgeon and research director of the Midwest Fetal Care Center. "So each passing week, the damage is accumulating."

Dr. Lillegard is part of a team that began performing fetal surgeries in 2016, to close the birth defect. 

"Typically, 85% of kids with Spina Bifida needed shunts, but with the fetal procedure we cut that shunt rate in half," Dr. Lillegard said. "And we doubled the number of kids who are going to walk."   

KARE11 witnessed that success firsthand in 2019, when we caught up with 3-year-old Clara Carlin, who was the first child in Minnesota to receive an open fetal surgery to repair her spine.

"We don't cure the disease with this surgery, but we greatly diminish the impact of the disease," Dr. Lillegard said. "Not only on the patient but on the family and the care system."

That impact is now magnified even more for the mother, thanks to the latest advancement, which relies on some tiny new instruments. 

"We came up with a fetoscopic approach, where we make three little incisions," Dr. Lillegard said. " They are five millimeter incisions in the uterus, and we can do the exact same closure. So we're able to provide the exact same benefit to the baby, while significantly reducing the risk to mom, both in this fetal intervention and subsequent pregnancies for her."

That gave Kinzie the confidence to undergo the first fetoscopic spina bifida surgery in Minnesota just 26 weeks into her pregnancy, and 11 weeks later she gave birth without requiring a C-section.

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"After the surgery, of course it hurt because there's still a baby inside of me moving around, it was very painful in that aspect," she said. "But I was able to give birth the way that I wanted to. It's like, if I had to give it a percentage, I think it was 100% successful."

As for Stella? As she approaches her second birthday, she has already achieved several significant milestones. She's even crawling despite ongoing treatment for two club feet. 

But the most encouraging sign is internal. Stella does not require a shunt to relieve fluid from her brain, and an MRI after her birth showed that a herniation of her brain, which could have led to lifelong issues with cognitive function, had already improved thanks to the surgery.

"It's completely reversed and it looks pretty normal," Dr. Lillegard said. "It's a pretty remarkable result."

"I don't even know what to say anymore," Burnham said. "It blows my mind every day that we were able to stop any further damage from happening because of this surgery. If we would have waited, who knows what would have happened. She probably wouldn't be crawling."

What's Kinzie's hope for Stella?

"Deep down I want her to be a ballerina, but I want her to be healthy and I want nothing to stop her from doing whatever she wants," she said.

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