A baby girl with a deadly genetic condition was treated for the condition while in her mother’s womb, in a world first.
Little Denver Coleman, now two months old, from Baton Rogue, Louisiana, is “thriving” and, according to her family, shows no signs of illness.
Her mother Kenyatta Coleman, 36, said it was “the most beautiful moment to be able to hold her, look up at her and then hear her cry” – after the child received a devastating diagnosis while still in the womb.
Ms Coleman was just weeks away from giving birth to her fourth child when she was told the unborn fetus was suffering vein of Galen malformation. The condition occurs when the blood vessel that carries blood from the brain to the heart doesn’t develop properly, putting too much strain on the body.
If young Denver was born with the condition, she had a 50 percent chance of developing immediate symptoms and a 40 percent chance of dying before her teens. A new trial at Boston Children’s Hospital offered a lifeline — a first-of-its-kind in-utero brain surgery, a rare procedure that requires doctors to operate on both patients.
Denver Coleman (pictured) was found to suffer from a condition that affects one in 60,000 and is called vein of Galar malformation, a rare disease that causes a cerebral artery to go straight into the veins, leading to dangerously high blood pressure
Kenyatta Coleman (right) and her husband Derek (left) discovered their child was suffering from the potentially devastating disease when they were 30 weeks pregnant. They underwent the surgery at 34 weeks
For in-utero surgery, doctors will break into the mother’s uterus and operate on the unborn child. In the procedure performed in Boston, scientists used an ultrasound to find nerves that would be affected by a rare 60,000 birth defect called Galen’s vein malformation. Children born with this condition have a 30 percent chance of dying by age 11. In this case, the surgery was successful and the child was born days later with no heart or brain problems.
It was successful and Denver Coleman was born healthy two days later. Mr Coleman describes her daughter as a ‘fighter’ and says she is doing well at the moment.
“She showed us from the very beginning that she was a fighter,” Ms. Coleman told CNN.
“She’s been demonstrating…” Hey, I want to be here.”
The surgery was documented in a case study published Wednesday in the journal Stroke of the American Heart Association.
“This approach has the potential to mark a paradigm shift in the management of Galen’s vein malformation,” said Dr. Darren Orbach, a surgeon at Boston Children’s Hospital.
‘We [repaired] preventing the pre-birth deformity and heart failure before it occurs, rather than trying to reverse it after birth.
“This could significantly reduce the risk of long-term brain damage, disability or death in these babies.”
Doctors used a needle to pierce the woman’s abdomen.
Then, using ultrasound to pinpoint the right spot, they cut into her uterine wall.
Surgeons then proceeded to cut into the unborn child’s brain and performed surgery to implant a coil near the artery that would restrict blood flow.
Ms Coleman says she and husband Derek, 39, had no pregnancy complications until the first 30 weeks of pregnancy.
Denver (pictured) was healthy at birth and is still doing well two months later. Doctors are excited about the surgery potential
Pictured: Denver with her three older siblings.
‘Baby did well. The anatomical scan came back unremarkable. All of her biophysical profiles were all unremarkable,” Ms. Coleman said.
“We really thought we were free.”
However, an ultrasound at 30 weeks made a shocking discovery. The child had malformed development of the arteries and veins in her brain.
Her doctors sat down with Mrs. Coleman and “she told me that something was wrong in the baby’s brain and also that her heart was enlarged.”
The child suffered from the disease, which causes blood to flow rapidly from an artery in the brain into veins without passing through capillaries.
As a result, this leads to the child developing dangerously high blood pressure and putting them at risk for heart disease and the failure of other vital organs.
Doctors then introduced the future operation to the woman. A challenging but quick procedure that can save the child from serious complications later on.
Before the surgery, the baby had to be turned over in the womb to get into a position where the procedure could be performed.
“So after learning, she was in the ideal position that was a confirmation for me [that I was doing the surgery]… there’s no escaping this,” said Ms. Coleman.
Although the surgery, performed 34 weeks and two days into the pregnancy, was a success, the mother still feared for her baby’s future.
‘Can she show continuous progress afterwards? Does she just need extra support after I get her? Will she still go into immediate heart failure?’ she asked.
Two days later, on March 17, Mrs. Coleman of Denver Coleman, who weighed 4.2 pounds.
“I heard her cry for the first time and that, I… I can’t even put into words how I felt at that moment,” she said.
“It was just, you know, the best moment to be able to hold her, look up at her, and hear her cry.”
The baby’s father finally met his new daughter days later in the neonatal intensive care unit.
“I kissed her and she just made little baby noises and stuff,” he said.
“That was all I needed there.”
Now, two months later, Denver Coleman is happy and healthy. Scans have now found problems in her circulation.
Researchers are working with the Food and Drug Administration (FDA) to conduct trials on the safety and effectiveness of this surgery, in hopes of expanding its use.
“The fetal intervention team at Boston Children’s Hospital and Brigham and Women’s Hospital have successfully devised another in utero procedure that has the potential to be very impactful,” said Dr. said.
Dr. Orbach continued, “We were thrilled to see that the aggressive decline usually seen after birth just didn’t show up.”
“We are pleased to report that at six weeks the baby is progressing remarkably well, taking no medication, eating normally, gaining weight and is back home.
“There are no signs of negative effects on the brain.”
The condition occurs when the circulatory system does not form properly in the first trimester of pregnancy.
Dr. Darren Orbach (pictured), a surgeon at Boston Children’s Hospital, said: “This approach has the potential to mark a paradigm shift in treating Galen’s vein malformation.”
The anterior choroidal artery in the center of the brain drains blood to capillaries – tiny blood vessels that connect blocks to the veins.
They serve almost as speed bumps, controlling how fast blood flows from the arteries to the body’s venous network.
However, this system can be disrupted if the veins and capillaries do not develop properly in the uterus.
In children suffering from a deformity of the vein of Galen, the blood goes directly into the veins, bypassing the capillary.
This leads to the artery draining the blood too quickly into the circulation. In turn, a person’s blood pressure will rise sharply, as the increase in flow puts more pressure on the rest of the circulatory system.
Over time, this can restrict blood flow to the heart, lungs, and other vital organs, potentially leading to failure.
Elevated high blood pressure also dramatically increases the risk of heart disease.
A 2019 study by French researchers found that 36 percent of children with the condition had died by age 11.
Current treatment for the deformity involves a brain embolism, which uses fat to restrict blood flow and work as capillaries do.
However, surgeons believe they can act before the child is born to prevent complications while alive.
This surgery is the first in a clinical trial being conducted to gauge whether this surgery is an appropriate treatment for the condition. Doctors have received FDA approval for their work.
‘As always, a number of these fetal cases will need to be performed and monitored to establish a clear pattern of improvement in both neurological and cardiovascular outcomes,’ said Dr Satou.
“So the national clinical trial will be crucial to obtain sufficient data and hopefully successful results.”