Baby who had lifesaving, first-of-its-kind brain surgery in utero now a thriving 2-month-old
A baby who underwent first-of-its-kind lifesaving brain surgery in utero to correct a deadly genetic defect is now a thriving 7-week-old infant.
The little girl was diagnosed with vein of Galen malformation (VOGM) when her mother, 36-year-old Kenyatta Coleman, was just 30 weeks pregnant. In an instant, Kenyatta and husband Derek Coleman, 39, went from excitedly awaiting their fourth child to a flurry of worry.
The rare condition occurs when the arteries connect directly with veins rather than capillaries, according to Boston Children’s Hospital, where the groundbreaking surgery was conducted. The capillaries slow the flow of blood to a manageable level, and without that buffer, blood rushes straight into the veins, hiking up pressure to dangerous levels.
The cardiovascular burden can lead to congestive heart failure, high blood pressure in the lungs, and other complications, the hospital’s website says. It can be fatal, even with treatment, and those who survive often are left with severe neurological and cognitive issues.
“Tremendous brain injuries and immediate heart failure after birth are the two big challenges,” Boston Children’s Hospital radiologist and VOGM expert Dr. Darren Orbach told CNN. “Fifty to 60 percent of all babies with this condition will get very sick immediately. And for those, it looks like there’s about a 40 percent mortality.”
The diagnosis seemed dire until the Colemans, of Baton Rouge, La., heard about a clinical trial in Boston run by Brigham and Women’s Hospital in conjunction with Boston Children’s. It held out hope that an even earlier intervention — while the baby was still in the womb — could improve her outcome.
Kenyatta and the baby underwent the intricate surgery on March 15, a month after the problem was detected, and the child immediately improved. Two days later, Kenyatta went into labor at 34 weeks and gave birth to Denver Coleman at 4 pounds, 1 ounce.
“I heard her cry for the first time, and I — I can’t even put into words how I felt at that moment,” Kenyatta told CNN.
Nearly two months later, little Denver is eating, growing, thriving and has not needed any more medical intervention. The results were published Thursday in the medical journal Stroke.
