(CNN) A team of doctors in Boston have successfully performed a new fetal surgery to treat a rare brain condition known as Galen’s malformation.
Intrauterine surgery performed before the baby is born has been used for other ailments, but this ultrasound-guided surgery was one of the first for this condition. Details of the procedure taken in March were published in the journal stroke on thursday.
This condition occurs when the blood vessels that carry blood from the brain to the heart (also called galenic veins) do not develop properly. Known as VOGM, this malformation can pump excessive amounts of blood into your veins and heart, leading to a range of health problems.
Dr. Darren Orbach, a radiologist at Boston Children’s Hospital and an expert in VOGM treatment, told CNN:
After birth, infants are usually treated with a catheter to insert small coils to slow blood flow. But Orbach says treatment is often too late.
Despite advances in care, “50 to 60 percent of all babies with this condition become very sick very quickly, and the mortality rate for those babies appears to be about 40 percent,” Orbach said. says. About half of the surviving infants experience severe neurological and cognitive problems, he said.
facing a choice
Derek and Kenyatta Coleman of Baton Rouge, Louisiana were surprised and excited when they found out they were pregnant for the fourth time. Kenyatta, 36, and Derek, 39, have been married for seven years and were ready to welcome a new family member.
Kenyatta said there was nothing particularly noteworthy about the pregnancy. After having three children, Kenyatta considered an ultrasound a regular appointment.
“The baby was fine. The anatomical scan was unremarkable. Her biophysical profile was all unremarkable,” said Kenyatta, who told CNN EXCLUSIVELY.
The Colemans even performed genetic testing that characterized Kenyatta’s pregnancy as “low risk,” she said.
But when Kenyatta had an ultrasound at 30 weeks pregnant, something was different. She remembers her doctor sitting her down and telling her he was worried.
“She told me that the baby had brain problems and an enlarged heart,” recalls Kenyatta.
Further investigation resulted in a diagnosis of VOGM.
But the Colemans knew that clinical trials at Brigham and Women’s Hospital and Boston Children’s Hospital could provide treatment before the baby was born.
Kenyatta remembers being told about possible risks, including premature birth and fetal brain hemorrhage, but the Colemans felt they had no other choice.
Kenyatta underwent surgery on March 15, just one month after an ultrasound revealed the malformation.
2 patient procedure
However, there were two patients in this operation, Kenyatta and her baby.
Doctors had to make sure the fetus was facing the correct position, with the head facing the mother’s abdominal wall. Dr. Louise Wilkins Haug, director of maternal-fetal medicine and reproductive genetics at Brigham and Women’s Hospital, said in partnership with Orbach that the fetus is not only in the right position for the procedure, but also stays there. I have confirmed that
Wilkins-Haug explained that he used techniques borrowed from previous intrauterine heart surgeries. Once the fetus is in the optimal position, “a small amount of medicine is injected to keep it from moving and a small amount of medicine is injected to relieve pain,” Wilkins-Haug said.
From there, doctors inserted a needle into the abdominal wall and carefully threaded a catheter through the needle so that a small metal coil could fill the vein, slowing blood flow and reducing pressure.
The baby showed immediate signs of improvement, with scans showing a drop in blood pressure in key areas.
“It was an exhilarating moment when we achieved technical success with embolization,” said Orbach.
But success isn’t just about the moment, it’s about what happens afterward.
“Can she continue to show progress after that? Will she need additional support after I give birth to her? Will she still go into heart failure quickly?” Kenyatta wondered. I thought.
always a fighter
After the procedure, Kenyatta was slowly leaking amniotic fluid. Two days later she gave birth at her 34 weeks.
Denver Coleman was born on March 17 weighing 4 pounds 1 ounce.
“The first time I heard her cry, I couldn’t even put into words how I felt in that moment,” recalls Kenyatta.
Denver Coleman was born on March 17th.
“Being able to hold her, look up at her and hear her cry was just the most beautiful moment.”
Her doctor was happy too. Wilkins-Haug said, “In her neonatal period, she was very stable and did not require the immediate medical attention normally required, such as placing coils and supporting heart function with medication. “I hope we don’t have to put any more coils.”
Derek remembers his first trip to Denver in the neonatal intensive care unit. Her doctors asked her if she wanted to kiss him.
“I kissed her and she was making little noises like a baby,” he said. “It was all I needed.”
Now, almost two months after Denver was born, she continues to thrive and spends most of her time sleeping and eating. She is off medication for heart failure and her neurological examination is normal. There are no indications she needs additional intervention.
“She showed from the beginning that she was a fighter,” Kenyatta said. “
