In honor of National Heart Month I spoke with Nicole Mogil, co-founder of Gavin's Got Heart, which works to make the process of learning how to help a child with congenital heart defects (CHD) less overwhelming for families. A CHD means a child is born with an abnormally structured heart and/or large vessels; CHDs are the number one birth defect in the U.S. One in every 110 babies is born with CHD and one-third of these children need life saving treatment in their first year of life, according to The Children's Heart Foundation.
Mogil started the organization after her son Gavin, now age 3, was diagnosed with three defects: double outlet right ventricle with transposition of the great arteries, coarctation of the aortic arch, and a Ventricular Septal Defect in utero. After six and a half weeks in the NICU and two major surgeries, Gavin was finally able to come home. "He had visits from home nurses and eventually started to do normal baby things," Mogil said. "When we were able to get over our anxiety and nervousness and actually enjoy being parents, that's when we decided that we really want to help parents who are going through this difficult journey." I asked her more about how Gavin's Got Heart is doing just that.
Gavin's Got Heart provides financial aid for families of children with CHD. What made you decide to help in this way?
Mogil: When we were in the waiting room at Columbia Presbyterian Hospital in New York City we would hear families on the phone with insurance companies discussing how to pay for loss of income and travel. Since the hospital specializes in congenital heart defect surgery, a lot of their cardiac surgeons are sought out by families all over the world. It was difficult to see families worry about hotels, tolls, and parking on top of the stress of having a baby in the NICU with heart problems. My husband and I said that if we could just get rid of one of those things for them, we would love to help.
Some families have directed the money toward insurance deductibles. One father was not offered paid leave from work so he used the donation to cover day-to-day expenses so he could stay with his son in the hospital. Another family used it for their travel expenses.
Does the hospital refer families to you, or do they seek out help themselves?
Mogil: Both. We work with social workers at the hospital who have been able to refer families to us but families can also contact us and put in requests for financial assistance on our website.
Are you working with hospitals in any other ways?
Mogli: We are working with South Side Hospital in Long Island, NY on the BEAT Program. Its aim is to screen members of the community to help detect undiagnosed CHDs and we fund the screenings. A lot of families may not find out their child has a CHD until she is collapsing on an athletic field. This is to help diagnose those undetected defects.
Had you known anything about congenital heart defects before Gavin's diagnosis?
Mogil: It's been a true learning experience, kind of like a crash course in medical school. All these rounds and appointments with these doctors, you are your child's only and strongest advocate. You really have no choice but to educate yourself quickly on all of this.
How did you learn what was wrong with Gavin's Heart?
Mogil: At the 20 week anatomy scans, ultrasound technicians are required to find the four chambers of the heart, and Gavin has four chambers. Our technician went further and checked what is called the outflow tracks, and if she didn't do that, which she wasn't required to, we would have had no idea. We probably would have seen him pass out at home and have trouble eating. We would have started our journey from there.
Did you know to ask for the extra testing?
Mogil: I didn't know to ask. And it's funny because today I just put on our Facebook page a list of questions to ask at your anatomy exam. There are questions that you can be proactive about to ask to make sure that the technician is looking at all aspects of the heart not just the four chambers. A lot of times we blindly trust the medical professionals.
Is there anything you would tell families who are going through this right now?
Mogil: Our biggest advice to everyone is to stay positive. We felt like the whole journey was a roller coaster. There will be downs. We feel really fortunate that we were able to bring Gavin home. Unfortunately, it's not always the end result. Just keeping the hope is important. We are enjoying every minute with Gavin and you don't know what tomorrow will bring, but you really can't worry about that, you can just enjoy today.
Alexandra Pastore is a features intern at Parents magazine.
Image of Heart via Shutterstock