The Washington PostDemocracy Dies in Darkness

A fetus had a 1% chance at life. A historic surgery in womb saved it.

Derek and Kenyatta Coleman with their newborn daughter, Denver, in April. (Drew Lederman/Boston Children’s Hospital)
6 min

Kenyatta Coleman walked into her doctor’s office in February excited for her ultrasound. For 30 weeks, Coleman’s unborn child had developed normally. She decided to name her Denver and celebrate with a shower the next month.

But all of Coleman’s plans changed that day. The ultrasound showed the fetus had brain abnormalities and an enlarged heart. Doctors in Baton Rouge diagnosed the unborn baby with a vein of Galen malformation, a rare pre-birth condition, and a 1 percent chance of survival.

That night, Coleman cried herself to sleep. When she awoke the next morning, she asked her husband, Derek, if the diagnosis was real or if she’d just had a nightmare. After that, Coleman said that “every ultrasound, I just went in a totally different person.”

Coleman vowed to do everything in her power to save her baby — a journey that resulted in her flying to Boston for a surgery that had never been attempted.

In mid-March, after roughly a dozen scans and procedures, Coleman held and kissed her new baby in a Brigham and Women’s Hospital bed. She was surrounded by exhilarated doctors who had completed the first successful fetal brain surgery two days earlier.

Denver has since returned to her family’s Louisiana home, where she’s maturing like any healthy baby, her family and doctors said.

“Knowing the possibility of not having her here, it’s like, ‘Wow, she really is a miracle,’” Coleman, 36, told The Washington Post. “We’re still taking that all in.”

Coleman became pregnant in July and viewed an ultrasound of the baby for the first time in September. While pregnant, she posed for professional photos and saw the baby’s facial features in a 4D ultrasound. She and Derek, 39, decided to name the baby Denver, after her stepfather dreamed about a child named Colorado. They had a gender-reveal party on Christmas and sent out invitations for a March 19 baby shower.

Coleman felt healthy until the 28th week of her pregnancy in late January, when she experienced intense itching on her legs. She was diagnosed the following week with cholestasis of pregnancy, which disrupts the flow of fluids to the gallbladder. That prompted her doctor at Woman’s Hospital in Baton Rouge to schedule weekly ultrasounds.

“Every time that I had a chance to see the baby, I absolutely loved it,” Coleman said. “I soaked it all in.”

But her perspective changed Feb. 15 when she went in for what she believed would be a routine checkup. Coleman’s doctor wondered if she had been sick because the ultrasound was showing several abnormalities, including an enlarged heart for the fetus due to a massive amount of blood traveling there.

An MRI found the fetus had a vein of Galen malformation, which occurs when brain arteries don’t connect to the proper veins. About one in 60,000 newborns are diagnosed with the condition, according to the American Heart Association, and doctors believe it’s caused by genetics. Babies with the condition can suffer from severe brain damage, heart failure and cognitive disabilities due to excess blood flow to those organs, but many die soon after they’re born.

Treatment for a vein of Galen malformation usually occurs after childbirth, but doctors gave Denver a 1 percent chance of surviving as she suffered from a severe case. However, they informed Coleman about a clinical trial Boston doctors were hoping to launch.

Darren Orbach, the co-director of Boston Children’s Hospital’s cerebrovascular surgery and interventions center, has treated many babies with vein of Galen malformations but became discouraged by the lack of reliable procedures. In recent years, Orbach’s colleagues have inserted a needle into unborn babies’ hearts to fix some conditions. In 2017, Orbach wondered if a similar procedure could be applied to a fetus’s brain.

In late 2020, Orbach said he and colleagues developed an experiment to adjust and connect arteries with the correct veins using a needle in an unborn baby’s brain. They waited for a patient whom they believed the surgery could save.

That patient was Denver. In early March, Orbach agreed to perform the procedure on Coleman’s unborn child. Coleman canceled her baby shower and flew to Boston with Derek a few days later on one-way tickets — they didn’t know how long they would be away.

On March 15, Coleman reclined on a Brigham and Women’s Hospital bed and listened to gospel music on her ear buds while undergoing the procedure. Using ultrasound footage to guide them, doctors guided a needle through Coleman’s uterus and into the back of the unborn baby’s skull. After doctors blocked a large vein that connected to arteries in the fetus’s brain, Coleman watched doctors pull the needle out of her unborn child’s skull to finish a successful surgery.

Still, Orbach was unsure if the procedure would improve the baby’s health. That was assessed March 17, when Coleman went into labor. Denver was born at four pounds, but for a few moments, she wasn’t breathing.

Then, Denver started crying.

“Knowing that she was alive and that her lungs were so strong — because the cry was so loud — that really gave me a sense of relief,” Coleman said.

Coleman held Denver before the newborn was sent to a neonatal intensive care unit. Denver didn’t experience the symptoms most babies with vein of Galen malformations typically endure, including brain irregularities.

Still, the new parents stayed at Brigham and Women’s and neighboring Boston Children’s Hospital with their baby for five weeks to ensure Denver was healthy. Coleman had been too nervous to order baby supplies before the surgery, so she purchased dozens of necessities online, including a car seat and a stroller, before returning home.

Orbach, 55, believes the success of Denver’s surgery is the first step toward saving more babies’ lives. He and his colleagues published their findings in the journal Stroke last week.

“It almost felt a little surreal,” Orbach said, adding it was “hard to actually believe that this was reality.”

When Coleman returned home April 19, her living room was filled with gifts friends and family members bought from the couple’s registry. Coleman takes Denver to doctor appointments almost every day, but the newborn has remained healthy.

“I look at her … just admiring her fingers and her toes and her facial features,” Coleman said. “And every time she cries or every noise that she makes, it’s like, ‘Wow, we have a baby in our home.’”