Estimated read time: 5-6 minutes
SALT LAKE CITY — Before she had even entered the world, Abigail Rose represented a medical milestone and a first for Utah.
At just 25 weeks gestation, Abigail was the recipient of the first in utero fetal surgery in the state of Utah. Babbling, waving and smiling on Wednesday, the now 11-month-old reunited with her caregivers to celebrate the anniversary of her surgery.
In utero fetal surgery is a complex procedure only available at a handful of hospitals across the country. The procedure is performed by an extensive team of surgeons, specialized in their fields, with care centered on the mother and the unborn child. Fetal surgeries can be life-saving or life-altering, but were previously unavailable in Utah.
A partnership between the University of Utah Health and Primary Children's Hospital extends the possibility to Utahns and surrounding regions with the Utah Fetal Center.
"In the past, the family would have to leave their home, and sometimes travel a great distance, and leave family behind and stay at another place for sometimes weeks or months," said Dr. Stephen Fenton, a pediatric surgeon and director of the Utah Fetal Center. "We're here to be able to bring these procedures to Utah and to the Intermountain West, which will allow moms and dads and babies to stay closer to home."
The proximity of care was a point of relief for Abigail's parents, Alisha Keyworth and Nick Staten, who live in Idaho.
During an ultrasound, doctors discovered Keyworth's fetus had spina bifida, a condition that leaves an area of the spine open and nerves exposed. The condition can cause a range of disabilities, including an inability or difficulty walking.
Spina bifida occurs in 1 of 3,000 U.S. births but is slightly more common in Utah, according to Intermountain Healthcare. A number of spina bifida cases opt to correct the anomaly after the baby is born, which is less optimal than correcting it in utero.
Keyworth said that despite knowing something was amiss with the pregnancy, the diagnosis was devastating.
"Getting that diagnosis was heartbreaking and shattering because I had felt that I had done something wrong," she said. "That was the most soul-crushing moment because when you get pregnant, your mind starts to envision what that's going to look like in the future. Crawling, blocking, talking, saying her first words, babbling, and all that sort of gets shattered."
The imagined possibility was a stark comparison to the gleeful Abigail she held in her arms Wednesday, as the child tugged on her mother's hair and giggled.
On April 6, 2021, Keyworth and Abigail underwent fetal surgery after substantial planning and coordination. The team of surgeons was able to correct the spinal anomaly in time to let it heal as part of its natural development. After surgery, Keyworth and her unborn child remained in the care of the Utah Fetal Center, where her medical team celebrated every milestone of the pregnancy.
The team brought in cupcakes when Keyworth reached 28 weeks pregnant; and just one month after the surgery, Keyworth went into labor. Abigail was delivered in an emergency cesarean section and received care in the U. newborn intensive care unit until she was healthy enough to go home.
Their lives since have not been without difficulty, said Keyworth, but Abigail continues to improve.
"It's a journey we're going to continue to ride with her and encourage her, let her decide what she's capable of and what she will do. We just know she's destined for amazing things," said Keyworth, bouncing the child on her hip.
That sentiment was echoed by the medical team who cared for her and followed her treatment plan closely.
"It's just amazing and a miracle," said Dr. Robert Bollo, a pediatric neurosurgeon at Primary Children's Hospital. "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 it's such an honor."
Abigail will receive follow-up care throughout her childhood to help ease difficulties or setbacks she may face.
Since Keyworth's and Abigail's surgery, four more fetal surgeries have been performed by the Utah Fetal Center. Fetal surgery can address anomalies within the heart and lungs if caught early, the doctors said.
"I am so excited we can extend our philosophy of 'the child first and always' from infancy to adolescence to the baby in utero, and their family as well. The health care for children in Utah is bright, and this is only the beginning," said Katy Welkie, CEO of Primary Children's Hospital.
Fetal surgery is part of Intermountain Healthcare's Primary Promise to create the nation's model health system for children. The Primary Promise is a multi-layered plan of approximately $500 million for children's health.
"We're not only looking at how you provide care to children during their most vulnerable time, like when they're sick or injured, making sure we have the utmost care here at Primary Children's Hospital, but we're also thinking of how do we keep kids healthy. How do we address emerging health needs? How do we make sure each child can reach their full potential?" said Welkie.
Correction: In a previous version, Intermountain Healthcare officials said Abigail received care at Primary Children's Hospital. It was actually the U. Hospital NICU.