In the first-of-its-kind brain surgery, doctors saved a baby in the womb from a deadly genetic disorder. Now, Derek and Kenyatta Coleman have a healthy baby girl.
Doctors have saved a baby in the womb from a deadly genetic disorder with a first-of-its-kind brain surgery.
Derek and Kenyatta Coleman have been married for seven years, and the Baton Rouge, Louisiana, couple were excited when they found out they were pregnant again.
"Baby was doing well. The anatomy scan came back unremarkable. All of her biophysical profiles were all unremarkable," Kenyatta, 36, told CNN, noting that nothing seemed out of the ordinary. Kenyatta and Derek, 39, also did genetic testing that showed the pregnancy as "low risk."
But when she went for her 30-week ultrasound, the doctor told her that "something wasn’t right in terms of the baby’s brain and also that her heart was enlarged."
The baby was diagnosed with a vein of Galen malformation at 30 weeks.
VOGM is a rare blood vessel abnormality inside the brain in which misshapen arteries in the brain connect directly with veins instead of capillaries, which slows blood flow and allows high-pressure blood to rush into the brain, according to Boston Children’s Hospital.
The extra pressure can cause a number of issues, including rushing blood towards the heart and lungs, which forces the heart to work overtime, congestive heart failure in some infants, and rising blood pressure leading to pulmonary hypertension. It can also prevent the baby’s brain from draining accurately, which can lead to brain injury, sometimes causing loss of brain tissue, and sometimes causing hydrocephalus — an enlarged head.
According to studies looking at all diagnosed cases of VOGM in the neonatal period — the first four weeks of a child’s life — about one-third of all patients do not survive, about one-third suffer moderate to severe neurocognitive compromise despite treatment, and only one-third survive to adulthood without "significant compromise," the Boston Children’s Hospital said on its site.
The Colemans decided their best option was to join the clinical trial for treatment, regardless of the possible risks, such as preterm labour or brain haemorrhage for the baby.
A team at Boston Children’s Hospital and Massachusetts General Hospital carried out the procedure on the foetus, cutting into the womb, then the baby’s skull, and ultimately operating on the developing brain. After they cut into the pregnant woman’s abdomen, they used an ultrasound to locate the baby’s artery and help navigate the procedure.
The surgery, performed at 34 weeks and 2 days gestational age, was documented in a case study published in the American Heart Association’s journal Stroke on Thursday.
The baby, Denver Coleman, was born two days post-op with no birth defects and limited complications at 4.2 pounds, which is light for a newborn. Most babies are born full-term at six to nine pounds, according to the American Pregnancy Association.
"I heard her cry for the first time, and that just—I can’t even put into words how I felt at that moment," Kenyatta told CNN. "It was just, you know, the most beautiful moment being able to hold her, gaze up at her, and then hear her cry."
"I gave her a kiss, and she was just making little baby noises and stuff," Derek said. "That was all I needed right there."
Three weeks after birth, the baby had no signs of abnormal blood flow shown in MRI scans and needed no cardiovascular assistance.
"We are pleased to report that at six weeks, the infant is progressing remarkably well, on no medications, eating normally, gaining weight, and is back home. There are no signs of any negative effects on the brain," lead study author Darren B. Orbach, MD, PhD, co-director of the Cerebrovascular Surgery & Interventions Centre at Boston Children’s Hospital and an associate professor of radiology at Harvard Medical School, said in a news release.
"In our ongoing clinical trial, we are using ultrasound-guided transuterine embolisation to address the vein of Galen malformation before birth, and in our first treated case, we were thrilled to see that the aggressive decline usually seen after birth simply did not appear," Orbach added.
Researchers and the Food and Drug Administration are working together to test the safety and effectiveness of the surgery through trials in the hopes of expanding its use.
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