All Posts CCHD Newborn Screening and Genetics

Dylan Coleman Has a Story to Warm Your Heart

by Nancy Maddox

Dylan Coleman Has a Story to Warm Your Heart |

Dylan Coleman, a vivacious one-year-old, is super smiley and loves to be held. “He’s got a ridiculous amount of hair,” says his mom, Michele, and “he loves his older brother.”

Yet if not for a simple newborn screening test, Dylan would likely not be alive today.

Flash back to December 2012, to the day Dylan was born in Silver Spring, Maryland. “The baby went to the nursery to sleep, and in the morning they didn’t bring him back to me when I asked for him,” said Michele. “I asked again:  Where is Dylan? Can I have him?”

As a pediatrician soon explained to Michele, Dylan’s pulse oximetry test—a painless procedure that uses a beam of light to measure to measure the oxygen in the blood—showed that Dylan wasn’t getting sufficient oxygen to his lower extremities. Doctors suspected a problem with his heart and arranged for Dylan to have an echo cardiogram, a sonogram of the heart that would let them view its parts in motion.

Said Michele, “I was very annoyed. I was dressed and ready to go home. My husband had already left to tend to our other son,” who was then two-and-a-half years old. “I was curious,” said Michele, “but I don’t remember being nervous. I was ready to go home.”

After waiting five hours for the on-call, weekend cardiologist to arrive and perform the echo cardiogram, Michele received devastating news:  Dylan was born with multiple heart defects and would have to have open heart surgery or he would die.

The newborn was taken directly to the neonatal intensive care unit and, late that evening, was transferred to Children’s National Medical Center in Washington, DC.

“A cardiologist drew a heart and walked me through the problem,” said Michele. “I totally felt like I was disconnected from my body, like I was blowing in the wind.”

In brief, Dylan’s aorta, the largest blood vessel in the body, was not completely developed (i.e., interrupted) and he had a hole between his pulmonary artery and aorta that enabled oxygenated and unoxygenated blood to mix. Also, his ductus arteriosis—a blood vessel that is used in utero and normally closes soon after birth—hadn’t yet closed.

The open ductus arteriosis, however, was actually good news. As Michele explains, “The interruption of the aortic arch was like an accident on the highway, and the [still-open] ductus was a detour, so the blood still could get through to the stomach and legs.”

As Dylan awaited surgery, he was given a drug called prostaglandin to keep the ductus arteriosis open and thereby maintain some blood flow to his lower body.

“If you don’t have blood flow to the stomach,” said Michele, “lots of things start to break down. [Without early medical intervention] Dylan might not have died right away, but within 72 hours his organs would have started to fail, because he wasn’t getting blood. . . . . The chances of him living a normal, healthy life went down and down and down, really, every minute that we waited [for medical intervention].”

Five days later, Dylan’s surgery was a complete success, and, about two weeks after that, he was discharged from the hospital. Said his mom, “You would never know that he had surgery. He does everything that he should be doing. He’s sweet and happy. At his last check up in August 2013, Dylan’s cardiologist told us everything was great and his heart is fully repaired.”

Michele Coleman realizes how lucky her family is. The state of Maryland began crib-side screening for congenital heart defects—via pulse oximetry—in September 2012, just a few months before Dylan was born. In fact, Dylan was the first baby born in Maryland to be diagnosed with a heart defect as a result of the test.

Had Michele delivered in Washington, DC, where she and her family live, Dylan would not have received routine newborn screening for heart defects.

Without pulse oximetry, Michele said, “we may have had a very different outcome.”

Maryland was the third state to add critical congenital heart disease (CCHD) to its newborn screening program. The state screens about 74,500 newborns each year, and, as of February 10, 2014, had detected four infants with CCHD via pulse oximetry testing, including Dylan.

Leave a Comment

Subscribe to get updates delivered to your inbox.