A team of doctors in Boston successfully performed a novel fetal surgery to treat a rare brain condition known as vein of Galen malformation.
Although in utero surgery – performed before a baby is born – has been used for other conditions, this ultrasound-guided procedure was among the first for this condition. Details of the procedure, which took place in March, were published in the journal Stroke on Thursday.
The condition occurs when the blood vessel that carries blood from the brain to the heart, also known as the vein of Galen, doesn’t develop correctly. The malformation, known as VOGM, results in an overwhelming amount of blood stressing the vein and heart and can lead to a cascade of health problems.
“Tremendous brain injuries and immediate heart failure after birth are the two big challenges,” Dr. Darren Orbach, a radiologist at Boston Children’s Hospital and expert in treating VOGM, told CNN.
Typically, infants are treated after they’re born using a catheter to insert tiny coils to slow down blood flow. However, Orbach said, the treatment often happens too late.
Despite advancements in care, “50 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,” Orbach said. About half of infants that survive experience severe neurological and cognitive issues, he said.
Facing a choice
When they learned of their fourth pregnancy, Derek and Kenyatta Coleman of Baton Rouge, Louisiana, were surprised and excited. Kenyatta, 36, and Derek, 39, have been married for seven years and were ready to welcome a new addition to their family.
Kenyatta said nothing seemed particularly notable about the pregnancy. After having three children, Kenyatta thought of ultrasounds as routine appointments.
“Baby was doing well. The anatomy scan came back unremarkable. All of her biophysical profiles were all unremarkable,” said Kenyatta, who spoke to CNN exclusively.