Bay Villager Melissa Alexander was beyond devastated six years ago when she discovered during a midterm screening her unborn child had a heart defect, but the expectant mother soon learned this type of congenital disorder was much more common than she ever would’ve thought.
“That’s the first good look doctors get at the heart, so a lot of families find out then,” said Alexander, who learned that her daughter-to-be suffered from Hypoplastic Right Heart Syndrome (HRHS). “What I found out was that she would need three open heart surgeries.”
Elliot Grace, was born on June 24, 2014, and underwent her first open-heart surgery at Boston Children’s Hospital at only three days old. She later endured her second and third medical procedures at the same hospital when she was six months and 2-and-a-half year old, respectively.
“About two years ago, after her third open heart surgery…I decided to stop sitting around, hoping for things to just ‘happen,’” wrote Alexander, one of countless “Heart Mom,” as mothers of children with heart defects are commonly known. “I founded The Children’s Heart Foundation of New England, and am working tirelessly with other heart families and volunteers across the region to raise funds to fight congenital heart defects.”
The Children’s Heart Foundation New England Chapter is a group of volunteers dedicated to raising awareness and money to support the national Children’s Heart Foundation’s mission of funding research to advance the diagnosis, treatment and prevention of congenital heart defects (CHDs). While there are many other “heart communities,” as Alexander calls them, she said theirs is the only that focuses solely on research.
“I was shocked to learn her diagnosis and how common it is – one in every 110 newborns has CHD – and more than half of CHDs are not detected prior to birth,” Alexander told this reporter. “In a weird way, I’ve become the central point for parents of children born with CHDs. I get emails regularly from friends of friends who have children with CHDs and want to know what to do.”
The most common birth defect in the U.S., CHDs afflict more than 40,000 babies born each year, and left undetected, many children succumb to them before the age of 1. There is no cure for a critical CHD, which requires lifelong medication, monitoring, continued treatment and, sometimes, additional surgery, but death rates from congenital heart defects have declined by 37.5 percent due to medical advancements.
The Children’s Heart Foundation has raised more than $13 million to support CHD research and scientific collaborations to date. Yet Alexander wrote, “We are only able to fund a small portion of the research grant requests we receive – more funding is needed to advance medical care and treatment.”
So, Alexander urges readers to show their support for The Children’s Heart Foundation New England today, especially since February is Heart Month and this week, Feb. 7-14, marks CHD Awareness Week.
On Saturday, Feb. 29, “Hops for Hearts” comes to the Exhibit ‘A’ Brewing Company in Framingham. For every full pour served, the brewery has pledged to donate $1 to directly support the nonprofit, and the fundraiser will also feature a silent auction, as well as an on-site food truck from Matilda Empanada.
Looking ahead, the New England Congenital Heart Walk (previously known as the Boston Heart Walk) takes place Saturday, May 2, on the Boston Common.
“We usually have about 500 participants and raise around $100,000, said Ramin, who is chairing the event for the third consecutive year. (Teams are now being recruited for the walk and sponsorship opportunities are also available; see contact information below for more information.)
Now 5-and-a-half years old, Elliot is thriving at the Josiah Quincy Elementary School in Boston. She is learning Mandarin and the cello, and has visited over 15 countries in Europe and Asia with her mother and baby sister to date. Elliot also raises money for CHD research by peddling lemonade in the summer and apple cider in the fall to her neighbors in Bay Village.
“She is alive because of research and the amazing doctors at Boston Children’s Hospital,” Alexander wrote.
For more information on The Children’s Heart Foundation New England, contact via email at [email protected] or visit https://www.childrensheartfoundation.org/new-england/. Follow the nonprofit on Facebook: https://www.facebook.com/TheCHFNewEngland/ and Instagram: @chfnewengland.