Doctors perform first in-utero brain surgery to treat rare condition

A vein of Galen malformation causes an enormous amount of blood that can stress a tiny heart.
A pregnant person holds their belly.
Vein of Galen malformation occurs when the blood vessel that carries blood from the brain to the heart does not develop correctly. Deposit Photos

A team of doctors and surgeons from Brigham and Women’s Hospital and Boston Children’s Hospital successfully performed a successful new fetal surgery. This time, they were able to treat a rare brain condition known as vein of Galen malformation

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While in utero surgeries performed before birth are used for other conditions, this was among the first for this contusion. The ultrasound-guided procedure took place on March 15 and the details were published in the journal Stroke on May 4.  

Vein of Galen malformation occurs when the blood vessel that carries blood from the brain to the heart (known as the vein of Galen) does not develop correctly. The malformation or VOGM causes an enormous amount of blood stressing the vein and the heart. It can lead to multiple health problems—including heart failure or brain damage that lead to death.

During Derek and Kenyatta Coleman’s 30-week ultrasound, doctors noticed something unusual, despite what had been a normal pregnancy. The fetus’s brain and heart were enlarged and more investigation led to a VBOM diagnosis.  

The couple from Baton Rouge, Louisiana enrolled in an FDA approved clinical trial run by Brigham and Women’s and Boston Children’s despite the risks of preterm labor or brain hemorrhaging for the fetus. The team performed the surgery at 34 weeks of pregnancy to repair the malformation while the baby was still in-utero. They used ultrasound guidance, a long needle that is similar to those used for amniocentesis, and small coils that were placed directly into the abnormal blood vessels to stop blood flow.

The technique is borrowed from previously performed in utero cardiac surgeries. Once the fetus is in the optimal position, it “gets a small injection of medication so that it’s not moving and it is also getting a small injection of medication for pain relief,” Louise Wilkins-Haug, the division director of Maternal Fetal Medicine and Reproductive Genetics at Brigham and Women’s Hospital told CNN.

The doctors then inserted a needle through the abdominal wall and carefully threaded a catheter through the long needle. This enabled the metal coils to fill up the vein, slow down the blood flow, and reduce the pressure. Scans showed decreased blood pressure in key areas and the fetus showed instant signs of improvement.

Kenyatta was slowly leaking amniotic fluid and went into labor two days after the surgery. On March 17, Denver Coleman was born, weighing 4 pounds and 1 ounce. According to her doctors, Denver was very stable in the immediate newborn period and did not need any immediate treatments like placing more coils or medication to support her heart function.  

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“The best part was when she was born, just seeing her in the NICU be fine and, you know, we would all sort of look at each other and pinch ourselves,” Darren Orbach, a Boston Children’s Hospital physician, told Boston CBS affiliate WBZ-TV.  “We were not sure when it was OK to celebrate because you just don’t see that with these babies. So that was really the moment that we knew that all was going to be great.”

Baby Denver continues to do well almost two months after the surgery and is not taking any heart failure, her neurological exam is normal, and there are no indications that she needs any additional medical interventions. “She’s shown us from the very beginning that she was a fighter,” Kenyatta told CNN.