Boston Doctors Perform Successful Brain Surgery on Baby Still in Womb

Baby Born After Surgery (Photo: Coleman Family)

A team of doctors in Boston successfully performed an innovative fetal surgery to treat a rare brain condition known as vein of Galen malformation.

While in utero surgery, performed before a baby is born, has been utilized for other conditions, this ultrasound-guided procedure represents one of the first attempts for this specific condition. Details of the procedure, conducted in March, were recently published in the journal Stroke.

Vein of Galen malformation (VOGM) occurs when the vein that carries blood from the brain to the heart, known as the vein of Galen, does not develop properly.

This malformation leads to an excessive amount of blood, causing stress to the vein and heart, potentially resulting in a series of health complications.

“Tremendous brain injuries and immediate heart failure after birth are the two big challenges,” said Dr. Darren Orbach, a radiologist at Boston Children’s Hospital and an expert in treating VOGM, in an interview.

Typically, infants are treated after birth using a catheter to insert tiny coils that slow down blood flow. However, Orbach noted that treatment often occurs too late.

“Despite advances 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 the infants that survive experience severe neurological and cognitive issues,” he added.

When Derek and Kenyatta Coleman from Baton Rouge, Louisiana learned of their fourth pregnancy, they were surprised and excited. Kenyatta, 36, and Derek, 39, who have been married for seven years, were ready to welcome a new addition to their family.

“Baby was doing well. The anatomy scan came back unremarkable. All of her biophysical profiles were all unremarkable,” Kenyatta said in an exclusive interview.

However, at Kenyatta’s 30-week ultrasound appointment, her doctor noticed something concerning. She recalls the doctor sitting her down and expressing worry.

“She shared with me that something wasn’t right in terms of the baby’s brain and also her heart was enlarged,” Kenyatta said.

Further investigation confirmed a diagnosis of VOGM. Fortunately, the Colemans had learned about a clinical trial being conducted by Brigham and Women’s Hospital and Boston Children’s Hospital that offered potential treatment before the baby’s birth.

Kenyatta remembers being informed about the potential risks—such as preterm labor or fetal brain hemorrhage—but the Colemans felt they had no other option than to join the trial.

On March 15, exactly one month after the ultrasound revealed the malformation, Kenyatta underwent surgery.

Medics in Surgery (Photo: PA Archive)

This surgery involved two patients: Kenyatta and her unborn baby. Doctors had to ensure the fetus was in the correct position, with its head facing Kenyatta’s abdominal wall.

Dr. Louise Wilkins-Haug, division director of Maternal Fetal Medicine and Reproductive Genetics at Brigham and Women’s Hospital, collaborated with Orbach to ensure the fetus remained in the optimal position throughout the procedure.

Wilkins-Haug explained they used a technique borrowed from previous in utero cardiac surgeries. Once the fetus was positioned correctly, “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,” Wilkins-Haug said.

The doctors then inserted a needle through Kenyatta’s abdominal wall, carefully threading a catheter through the needle to place tiny metal coils into the vein, slowing blood flow and reducing pressure.

Immediately after the procedure, the baby showed signs of improvement, with scans indicating decreased blood pressure in critical areas.

“It was exhilarating at the moment that we had technical success at doing the embolization,” Orbach recounted.

However, success wasn’t solely defined by that moment, but rather by what would follow.

“Will she be able to continuously show progress after? Will she need just additional support after I have her? Will she go into immediate heart failure still?” wondered Kenyatta.

Following the surgery, Kenyatta began leaking amniotic fluid slowly. Two days later, at 34 weeks gestation, she went into labor.

On March 17, Denver Coleman was born, weighing 4 pounds and 1 ounce.

“I heard her cry for the first time and that just, I – I can’t even put into words how I felt at that moment,” Kenyatta remembered.

Her doctors were equally pleased. “In the immediate newborn period, she was very stable and didn’t need any of the immediate treatments that they typically need, whether it’s placing coils or whether it’s supporting her heart function with medications,” Wilkins-Haug said. “Our hope is that she won’t need any further coils placed.”

Derek recalled visiting Denver for the first time in the neonatal intensive care unit and being asked if he wanted to kiss her.

“I gave her a kiss and she was just making little baby noises and stuff,” he said. “That was all I needed right there.”

Now, nearly two months after Denver’s birth, she continues to thrive, spending most of her time sleeping and eating.

She does not require any medications for heart failure, and her neurological exam shows normal results. There are no indications that she needs additional interventions.

“She’s shown us from the very beginning that she was a fighter,” Kenyatta said. “She’s demonstrated … ‘Hey, I wanna be here.’”

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