Advancements in medical science are the difference between life and death for more and more people every year.
For doctors who are willing to try new things and patients who are ready to accept the risks in hopes of a better life, there are medical procedures that are nothing short of miraculous.
Such was the case for Derek and Kenyatta Coleman, and their daughter Denver, of Baton Rouge, Louisiana. When one of these risky yet seemingly miraculous procedures was suggested to the Colemans, their daughter, who would be the one receiving the surgery, had yet to be born.
Unexpected complications
When Kenyatta found out she was pregnant with her fourth child, she had no reason to worry about any complications. The pregnancy was deemed low risk. She was receiving excellent prenatal care and felt just fine. She saw her doctor regularly and had her ultrasounds right on schedule.
Everything was routine, all checks in order, until about 30 weeks.
After that ultrasound, Kenyatta’s doctor sat her down and told her that she had seen a malformation. The scan showed that the baby’s heart was abnormally large. “She shared with me that something wasn’t right in terms of the baby’s brain,” Kenyatta said.
That something turned out to be a vein of Galen malformation, or VOGM.
It’s a rare blood vessel abnormality in the brain that causes a high-pressure rush of blood into the veins. With VOGM, the heart works harder to get blood to all the parts of the body, which can lead to congestive heart failure in infants. Brain injuries arise from blood in the infant’s brain not draining adequately.
“Tremendous brain injuries and immediate heart failure after birth are the two big challenges,” explained Dr. Darren Orbach, a radiologist at Boston Children’s Hospital. He added that 50-60% of babies born with the condition get sick immediately after birth. Forty percent of those will die, and 50% will have severe neurological and cognitive issues.
Brain surgery for baby Denver
The news came as a shock — but then the Colemans were presented with another option.
A clinical trial was underway with collaboration between Brigham and Women’s and Boston Children’s Hospitals. If the Colemans wanted to participate, their baby could have a life-saving brain surgery, before it was even born.
There were risks, they were told, some great (like fatal brain hemorrhage) and others less so yet still problematic (preterm labor). But the risks of doing nothing, in the Colemans’ eyes, were far greater. They decided to join the clinical trial.
In-utero surgery is not completely new. It exists for a few specific birth defects, including fetal anemia, lower urinary tract obstruction, spina bifida, and certain complications related to twins. But an in-utero brain surgery, like the one that Kenyatta and her daughter Denver went through, is revolutionary.
The surgery required several smaller successes to fall into line.
First, doctors had to make sure that the baby was facing the abdominal wall. Once she was in position, they had to administer a drug that would keep her still for the duration of the surgery as well as pain medication.
Dr. Louise Wilkins-Hang, division director of Maternal Fetal Medicine and Reproductive Genetics at Brigham and Women’s Hospital, and Dr. Darren Orbach operated on the Kenyatta and her daughter. After prepping their patients, they inserted a catheter through Kenyatta’s belly and into her baby in order to slow the baby’s blood flow and relieve pressure.
Post-birth results of the brain surgery
The doctors watched monitors anxiously and were soon rewarded with positive signs. The baby’s blood pressure was decreasing. “It was exhilarating at the moment,” said Dr. Orbach. Still, both doctors wondered if the effects would be long-lasting for baby Denver and if the birth would happen without complications.
They didn’t have to wait long to find out. After the surgery, Kenyatta started to lose amniotic fluid. Doctors decided to induce labor in an effort to save the baby.
When Denver was born, she weighed only four pounds. Doctors held their breath—but the tiny baby gave a hearty cry. “I heard her cry for the first time and that just…I can’t even put into words how I felt at that moment,” said Kenyatta.
The cry was not the only sign that Denver was fine.
Said Dr. Wilkins-Haug, “In the immediate new newborn period, she was very stable and didn’t need any of the immediate treatments that they [babies with VOGM] typically need.”
Both doctors breathed a sigh of relief.
Two months later, Denver Coleman is thriving. Her mother says, “She’s shown us from the very beginning that she was a fighter.” She’s not on any medications and doesn’t appear to need any more medical interventions. Denver is the Colemans’ miracle baby.
Derek and Kenyatta took a chance to give their baby a better life, and doctors at the two Boston area hospitals fought hard to make it happen. Now, all the Colemans have to do is enjoy their little miracle.
