About one in every 100 children is born with a congenital heart defect (CHD), an abnormality in cardiovascular structures that occurs while the fetus is still developing. Many will produce symptoms at some point in the person’s life, whether at birth or well into adulthood. Some can be devastating; others may remain completely benign.
Little Gavin Mogil is not only one of that unlucky 1 percent; his CHD makes him more like one in 10,000. Gavin was born on November 23, 2011, with double outlet right ventricle (DORV) with transposition of the great arteries (TGA). His mother, Long Island Campus alumna Nicole Drossos Mogil ’05, has to pause for a second to arrange the words from that mouthful of a diagnosis into the proper order.
If you put him into a lineup with a bunch of other toddlers, you’d be hard pressed to identify Gavin as the “abnormal” one. He looks and acts the part of a healthy and active 2-year-old, but for months before he was born and for months after, this outcome was anything but certain.
“At 20 weeks they do the anatomy scan, and they were telling us they just couldn’t get a good view of his heart,” Nicole says. “We went back a second time and they still couldn’t get a good view of the heart, so they sent us to get a fetal echo.
“I think they knew the whole time something was going on,” she adds. “As a mom and a dad, you have that feeling as well, when doctors are speaking to you in those very surface kind of explanations: ‘we just want to make sure he’s positioned the right way …’ and you go home and you Google it and you research everything.”
The echocardiogram confirmed their fears. The initial diagnosis, DORV, was correct, but Nicole and her husband, Greg, would have to wait until their baby was born to understand the full scope of his condition.
“In essence, his pulmonary artery and his aorta were switched,” Nicole explains. “His blood wasn’t getting oxygenated. He had a VSD [ventricular septal defect], which is a hole between his two ventricles, and his aorta was narrow — coarctation of the aorta.” Gavin would have his first surgery at only 6 days old. “It was more invasive than they expected; they really had to manipulate around the heart,” Nicole says. “It was about seven hours; he was on bypass for three and a half of it.” The second surgery would follow two weeks later.
After six and a half grueling weeks in the neonatal intensive care unit (NICU) at Morgan Stanley Children’s Hospital of New York-Presbyterian, Gavin and his parents returned to their home in Islip. Today, though he is 100 percent dependent on a pacemaker to keep his heart rate at a proper level, his long-term prognosis is excellent.
“We’re definitely in a totally different place, much more positive,” Nicole says. “I tell Greg I often forget about his heart defect. He’s running around and climbing on things he shouldn’t be climbing on, all of those great things.
“I think that’s fantastic and that’s a blessing, but I do think that sometimes that’s why congenital heart defects don’t always get attention, because you’re not looking at a sick kid. He doesn’t look sick, which is great, I wouldn’t want to change that for anything, but I really feel strongly that there should be more awareness out there.”
Grateful for Gavin’s good health, the Mogils decided to spread awareness of congenital heart defects while also helping other families affected by CHDs to persevere through their own challenges. In December 2012, they established a 501(c)(3) nonprofit organization and called it, very appropriately, Gavin’s Got Heart (www.gavinsgotheart.org).
“When we were in the hospital with Gavin, for those six and a half weeks in the NICU, you see everything, unfortunately,” Nicole says. “You see a lot of parents not going home with their kids, and you see parents there who don’t have the insurance to pay for treatment. You see parents who are traveling out of state and how they have to leave their jobs, still pay their mortgage, somehow pay for travel accommodations, and it’s all these things that are on top of caring for their child.
“You don’t realize how lucky you are. We thought we were in the absolute worst position ever, and then we see these families that have so many more layers to their situation, and it’s really eye opening.”
The first family Nicole and Greg sponsored belonged to one of Greg’s former classmates, whose son happened to use the same surgeon as Gavin; the families became acquainted and visited one another in the hospital. The second family, from Bay Shore, they met through a nurse at Good Samaritan Hospital. The Mogils raised $2,500 and $3,500 for those families, respectively, followed by another $3,500 for a family in the Bronx, $500 for the Single Ventricle Clinic at Morgan Stanley Children’s Hospital and $7,500 for a family in Westchester.
After only a few months, the couple worked with Suffolk County Legislator Tom Cilmi to establish an annual Congenital Heart Defect Awareness Week, February 7-14. They have also been working with other organizations, including Mended Little Hearts and the Children’s Heart Foundation to host a variety of fundraisers, including house parties, fishing trips, hockey tournaments and a family day at Riverhead’s Gingerbread University, as well as Macy’s eighth annual Shop for a Cause in August.
Nicole, a former child study major, worked as an elementary school teacher in Smithtown until Gavin was born. Now she has immersed herself fully into Gavin’s Got Heart. “It’s been a great experience so far. A lot of work, but it’s worth it,” she says. “I didn’t realize that a nonprofit turns into a business that you’re running. It’s a lot of logistics to iron out.”
Gavin’s Got Heart hosted a number of events last fall to raise money for families, as well as for the Morgan Stanley Children’s Hospital of New York-Presbyterian. For a complete listing of their upcoming events, and to learn more about congenital heart defects, visit www.GavinsGotHeart.org.
• CHDs are the most common birth defect and leading cause of birth defect related deaths worldwide.
• About 1 out of every 110 babies is born with some type of CHD.
• Thanks to improvements in survival, the number of adults living with congenital heart defects is increasing to about 85 percent.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
Did you know … ?
• Nearly twice as many children die from congenital heart defects in the United States each year as from all forms of childhood cancer combined.
• Funding for pediatric cancer research is five times higher than funding for congenital heart defects.