Alisha Keyworth wasn’t scared until she was lying in the operating room and saw how many people were buzzing around her, prepping for the first-of-its-kind surgery in Utah that she was about to be part of.
That is when, she said, she realized, “Wow, this is like a really big thing.”
But then she felt someone place a hand on her shoulder and reassure her. “We’ve got you,” they said. “We’re going to take care of you and Abigail. Don’t worry.”
On Wednesday, Keyworth, who lives in Victor, Idaho, reunited with some of the doctors from Intermountain Primary Children’s Hospital and University of Utah Health who kept their promise.
She thanked them through joyful tears and hugs. Sitting on her hip, with her mother’s arm around her, was a healthy Abigail Rose, the now 11-month-old girl who they were there to celebrate. She babbled and cooed, with a tiny ponytail atop her head.
Last year, on April 6, 2021, Keyworth underwent the first in-utero fetal surgery to be performed in Utah. About a month later, she gave birth to Abigail Rose via cesarean section at University of Utah Hospital.
When Keyworth was pregnant, she learned that her daughter had spina bifida, a congenital anomaly that leaves an area of the spine open and nerves exposed and can affect a child’s mobility. The condition occurs in one of every 3,000 births in the U.S., and it “is slightly more common in Utah,” according to a news release.
Now, a little over a year later, her mom said Abigail Rose made another “huge milestone the other day.”
“She got up on her hands and knees for the first time,” Keyworth said with a smile during a news conference Wednesday at Primary Children’s. “That was something we thought would never happen.”
Since helping Keyworth and her daughter, Dr. Stephen Fenton, the director of the Utah Fetal Center, said his team has done this surgery two more times to repair spina bifida on a fetus while still in the uterus.
Soon, they hope to do in-utero fetal surgeries for other conditions, too.
For instance, there is a condition called twin-twin transfusion syndrome, Fenton said, where two twins share a placenta, “and one twin kind of steals blood from the other.” Using a laser, doctors can divide blood vessels and improve the chances that both twins are born at term, he said.
By being able to perform these surgeries, including now in Utah, Fenton said, the goal is to create better outcomes for children such as Abigail Rose, who was giggling and smiling Wednesday.
“Without you guys, we wouldn’t have Miss Abigail Rose,” said Nick Staten, the baby’s father and Keyworth’s fiance, told the medical team.
Thinking back, Keyworth said that getting the diagnosis of spina bifida “was probably the most soul-crushing moment” for her “because when you get pregnant, your mind starts to envision what that’s going to look like in the future, crawling, walking, saying her first word. ... All these milestones.”
“That just gets shattered,” she said. “You’re told she may never walk. She may never do this, do that. ... I spent probably a week and a half just crying because there’s so many unknowns with this diagnosis.”
Staten added: “I was very scared. I went down a dark hole,” searching about his daughter’s condition online.
But as the couple did their research and met with doctors, they found hope.
“The complex, often life-saving surgery is available at only a few hospitals nationwide,” according to a news release. And Keyworth and Staten said they were relieved to be able to come to the Utah Fetal Center, just four hours from home, rather than having to travel as far as Texas or Philadelphia.
Keyworth was put under anesthesia for the surgery, which lasted about two hours, according to Fenton. And it was done at 24 weeks gestation.
Doctors exposed and opened Keyworth’s uterus, he said, closed the spina bifida on Abigail Rose, and then closed Keyworth up to recover.
The weeks after were “the most taxing” physically for Keyworth. “Your body’s just gone through a big surgery, and then you’re developing a life,” she said.
At about 26 weeks, “I was like, ‘That’s it,’” she said. “I can’t do this anymore.”
But with the encouragement of her doctors — or as she calls them, her “cheerleaders” — Keyworth made it past 28 weeks, which was the goal. She gave birth last May.
Years in the making
Repairing Abigail Rose’s spina bifida in utero — rather waiting to do surgery after she was born — reduced her chances of developing hydrocephalus, which is when fluid builds up on the brain, said Dr. Robert Bollo, a pediatric neurosurgeon.
It also helped her mobility since the condition could affect her ability to use her legs, he said.
“The number of people that actually participated and helped with this surgery, it would read off like having won a Grammy Award,” Fenton said. “The names are extensive.”
In the operating room alone, there were about 20 people, he said, including anesthesiologists for the mom and fetus, pediatric surgeons, maternal-fetal medicine physicians, neurosurgeons, techs and nurses and a fetal cardiology person who used an ultrasound to monitor Abigail Rose’s heart during the procedure. A neonatology team was also ready if they needed to deliver the baby early.
Utah doctors were able to perform this surgery for the first time, Fenton said, after years of planning and preparation, made possible by bringing together a team of physicians with different expertise at the Utah Fetal Center.
“For over two years before the procedure was even done, we were meeting on a monthly basis to make sure we had protocols in place, we had the equipment, everyone knew what their role was,” he said.
They also did a practice simulation several times in the operating room.
To other parents out there who have a child with spina bifida, Keyworth and Staten said they want them to know there is hope, and a medical team ready to help them.
As for Abigail Rose, “she’s defying my expectations,” Keyworth said, “and just showing me everyday that she’s so strong and resilient and determined and very stubborn — just like me.”
The mother said she is excited for her daughter’s future, and the opportunity to “let her decide what she’s capable of and what she will do.”
Becky Jacobs is a Report for America corps member and writes about the status of women in Utah for The Salt Lake Tribune. Your donation to match our RFA grant helps keep her writing stories like this one; please consider making a tax-deductible gift of any amount today by clicking here.