Local mother, father, baby reunite with medical staff after Utah’s first in-utero fetal surgery

VICTOR — A local mother, father and baby reunited with a Utah medical team Wednesday, to celebrate one year since the team performed a life-saving procedure on the baby.

“To see the people who altered our lives in such a positive way is really amazing,” said Alisha Keyworth of Victor.

Alisha and her unborn baby at the time were the first patients to undergo in-utero fetal surgery in Utah on April 6, 2021. A specialized medical team at Intermountain Primary Children’s Hospital and University of Utah Health performed the surgery.

Alisha told reporters on Wednesday in Utah during a press conference, that the surgery happened because of what was discovered during an ultrasound. Doctors found that her fetus had Spina bifida. It’s a birth defect where a developing baby’s spinal cord fails to develop properly. According to doctors, Spina bifida occurs in 1 of every 3,000 U.S. births.

She along with the baby’s father, Nick Staten, explained they were scared at first.

“Getting that diagnosis was heartbreaking and shattering because I had felt that I had did something wrong. I knew right away that termination was never an option. She is my baby and God gave me her for a reason,” Alisha explained. “When you get pregnant, you start to envision what that’s going to look like in the future. Crawling, walking, saying her first word, babbling, all these milestones and that just gets shattered. You’re told she may never walk, she may never do this, do that. She may need a shunt … all of these things are basically put on our plate after a difficult diagnosis.”

Alisha said after learning the diagnosis, she cried for a week and a half about it. She underwent a series of tests and she and Nick finally met with a medical team and discussed options.

“We were really happy and thankful to know that fetal surgery was an option,” Alisha said.

At the newly created Utah Fetal Center, doctors performed the in-utero surgery on the fetus to address the anomaly at between 24 to 25 weeks of gestation. After the surgery, the fetal spine was able to heal as part of its natural development. A month after her surgery, Alisha needed an emergency cesarean section and gave birth to her daughter Abigail.

The complex, often life-saving surgery is available at only a few hospitals nationwide and now includes the Utah Fetal Center, according to a hospital news release. The procedure is performed only by specially trained pediatric surgeons, with extensive planning and care for the mother and unborn child. According to doctors, fetal surgeries are a game-changer in expert care that can significantly improve health outcomes for newborns.
 
“The surgery is so complex that only a handful of hospitals in the country can perform it,” said Stephen Fenton, a pediatric surgeon with University of Utah Health and Intermountain Primary Children’s Hospital and director of the Utah Fetal Center. “We now have the partnership, expertise, and facilities to perform these fetal surgeries here in Utah so families don’t have to travel across the country to access this innovative procedure.”

The fetal surgery for Alisha, which took about two hours, was made possible through a partnership between University of Utah Health and Intermountain Primary Children’s Hospital.

Alisha and Nick said they are grateful to doctors and have seen their daughter progress in life at 11-months-old.

“She made a huge milestone the other day. She got up on her hands and knees for the first time. That was something that we thought would never happen,” Alisha said. “She’s defying my expectations and showing every day that she is so strong and resilient and determined and I’m very proud of her.”

In the news release, it said that in many cases, women choose to wait until after their baby is born to have surgery to fix the condition Spina bifida. Doctors note waiting to fix Spina bifida isn’t optimal either because there is more room for complications to arise. Fetal surgery also can address other anomalies of the heart and lungs when caught early.

“Just seeing her (Abigail) grow and develop and get up on her hands and knees and start to develop motor function is just amazing and it’s a miracle. We know that fetal surgery can benefit kids with Spina bifida in so many different ways and to see her start to see those benefits in real-time— just blows me away. It’s why I do this job and why taking care of kids is such an honor,” said Dr. Robert Bollo, from University of Utah Health and Primary Children’s Hospital.