Doctors have saved a baby’s life in utero with an aggressive, life-threatening brain malformation that could have led to heart failure, severe brain injury, or death after birth. Two months on, the baby’s parents are looking back at their daughter’s extraordinary story.
Filmmaker and photographer Derek Coleman, 39, and his wife, human resources professional Kenyatta Coleman, 36, live with their four children in Denham Springs, Louisiana.
Their daughter Denver’s survival has become a huge medical success story.
The Anxious Wait
“Within our first trimester we did genetic testing, just as a precaution, and our results came back low risk,” Kenyatta told The Epoch Times. “In the second trimester, we had an anatomy scan. There was nothing that would have suggested there was an abnormality with the baby’s brain and heart.”Around the 28th week, Kenyatta began experiencing itching in her legs. She saw her doctor, who sent her for blood tests.
“The itching turned out to be intrahepatic cholestasis of pregnancy. It’s a condition that affects my liver that could be detrimental to the health of the baby,” the mom said. “Because of that diagnosis, my doctor suggested doing weekly ultrasounds.”
During a routine ultrasound on Feb. 15, Kenyatta’s 30th week of pregnancy, she noticed the technician “paying close attention to the baby’s brain and heart.” Kenyatta wasn’t given any specific diagnosis but was told that hers was a “high risk” pregnancy and the baby had a brain abnormality, dilated ventricles, and an enlarged heart.
The anxious parents consulted a couple more experts. At 31 weeks, baby Denver was officially diagnosed with a vein of Galen malformation (VOGM), a rare prenatal condition in which arteries carrying high-flow, high-pressure blood connect directly with veins at the base of the brain, rather than to the capillaries that slow blood flow and deliver oxygen to surrounding brain tissue. As a result, Denver’s heart was strained and enlarged.
In-Utero Surgery
The baby needed immediate surgery if doctors were going to stand a chance of saving her life.“There was a 99 percent chance that she was going to go into heart failure shortly after birth, or while I was pregnant with her in utero,” Kenyatta said.
The Colemans connected with neuro-interventional radiologist Dr. Darren B. Orbach of Boston Children’s Hospital, who was doing a clinical trial. He agreed to take on Denver’s case because of its critical nature. The baby needed a procedure known as embolization to decrease blood flow to her brain and take the strain off her heart.
“We knew, going in, that because it was a clinical trial there were risks associated,” Kenyatta said. “It could be complications with the baby after the procedure, or during the procedure, including complications with me. Complications could have resulted in me having to have an emergency C-section. ... Derek and I, we just came to the conclusion that the risks associated with the clinical trial outweighed the risks had we taken that ‘wait and see’ approach.
23 Coils, 20 Minutes
On March 15, a multidisciplinary team from Boston Children’s Hospital and Brigham and Women’s Hospital, led by Orbach, assembled to place coils inside baby Denver’s skull in utero in a complex and delicate procedure, the first of its kind. The baby was 34 weeks and 2 days gestational age at the time of surgery.Kenyatta canceled her baby shower, unsure if she would ever be bringing her baby home.
“I would be given an epidural,” she said. “I would be awake for the procedure. The baby would also receive anesthetic to make sure that she’s in place. They would also give her an injection of a pain med to help with any pain that she may have had.
“The procedure itself is very much like an amniocentesis. ... It’s like a small puncture in the back of the baby’s head so they can look at the back of her skull so that they could strategically place the coils inside of the malformation,” she said.
It took doctors three rounds, taking breaks at five-minute intervals to calm the baby’s heart rate, to place 23 coils in baby Denver’s skull. End to end, the procedure took 20 minutes.
“I had my little headphones in, just listening to music, gospel music to be specific,” Kenyatta said. “After the procedure, one of the team members that was in the room removed my headphones and told me, ‘That’s a wrap!’ Everything was done, the baby did beautifully.”
Reunited after surgery, Kenyatta and Derek found out that Kenyatta’s amniotic fluid was leaking. The embolization had worked, but the baby was coming. She had to be induced and gave birth to preemie Denver two days post-surgery on March 17.
Thriving
When Denver was born, she wasn’t breathing. She was “whisked off” by nurses to have her airway cleared of amniotic fluid. As soon as Kenyatta and Derek heard their baby girl cry, their hearts soared.Kenyatta said: “I didn’t think I would give birth to a live baby, considering the odds. I cried. I rejoiced inside. It was just so much going on. They allowed me to see her before they whisked her off to the NICU [Neonatal Intensive Care Unit]; they actually placed her on my chest for a while. I got a chance to actually hold her and see her face, and that was a big deal for me.”
Denver weighed 4 pounds, 1 ounce at birth. Other than her prematurity, she was a “perfectly fine, perfect little human” and spent just 11 days in the Boston Children’s NICU for monitoring.
Kenyatta, who had stumbled across a nonprofit vein of Galen malformation support network during her online search before the official diagnosis, says being a part of the group she’s learned that some full-term babies with this condition don’t do well, and “a lot of them unfortunately pass away within their first days of life.” But their own premature baby, who had a large malformation and just had the surgery, “is thriving.”
Advocacy
While in the NICU, Denver learned to drink from a bottle. After transfer to Brigham and Women’s Hospital on the 11th day, she began breastfeeding and moved to an open crib. She was discharged on April 19 with low-flow oxygen for pulmonary hypertension, since resolved, and at the time of writing, she weighs a little over 8 pounds.“She’s meeting milestones,” Kenyatta told The Epoch Times. “This child only had that one embolization in utero, and as of today hasn’t required any additional surgery. ... Her heart function is actually even better than it was upon discharge from the NICU.”
However, Denver is not considered “cured,” said the mom. She has bi-weekly ultrasounds to check her status and will live the rest of her life with the 23 coils in her head. But besides limiting sports with a higher risk of head injury, Kenyatta and Derek hope that their daughter will enjoy a normal life and be able to participate in “pretty much anything.”
The VOGM is a condition of unknown origin and usually develops between the 11th and 12th week of gestation, Kenyatta said, but it’s often only first seen during the late second or third trimester of pregnancy.
Kenyatta said, “It’s not just a mystery as to why it happened to Denver. It’s a mystery in terms of why it happens to other children, too, ... and this is something that I'd like to advocate for.
“Denver enjoys bonding with her siblings. She’s enjoying tummy time. She enjoys music, and she enjoys being read to. She‘ll ’coo‘ and she’ll smile, and she'll look around. She’s always very alert when she’s awake. She’s doing awesome!”
