LITTLE HEART, BIG COMMUNITY

The month of February has been observed as American Heart Month since 1963, when President Lyndon Johnson first declared its observance as a way of bringing awareness to heart health and heart and blood vessel diseases. For Monmouth County resident Corinda Bravo and her daughter Lenore, February holds a more personal significance. February 2nd marks Lenore’s (who goes by Lenny) “heart-iversary”, the yearly commemoration of her first open heart surgery when she was a three week old infant.

Corinda was first made aware that there was an issue with Lenny’s heart at her 21-week prenatal check-up. Lenny had not even had the chance to take her first breath when doctors informed Corinda and her husband Matt Smith that Lenny had a congenital heart defect (CHD). Pediatric cardiologist Dr. Loyda Rivera diagnosed Lenny with Tetralogy of Fallot, a congenital heart defect involving four major complications: a l arge ventricular septal defect (or hole) in the wall between the two chambers of the heart; pulmonary stenosis : a narrowing of the pulmonary valve and main pulmonary artery; an overriding aorta ; and ventricular hypertrophy : t he muscular wall of the right ventricle is thicker than normal. All of this meant that Lenny’s cardiovascular system had to work harder than normal to provide sufficient oxygen to her heart.

T he Bravo-Smith Family’s world transformed in that instant. Corinda was instructed to transfer her care to the Children’s Hospital of Philadelphia (CHOP), where doctors specializing in pediatric cardiology would be able to give Lenny the best possible treatment options.

T he remainder of Corinda’s pregnancy was a challenging one. When t he moment came for Corinda to deliver Lenny, it was an emergency situation, the possibility of which had been planned for by the medical team. Lenny was born via an emergency c-section at Jersey Shore University Hospital, where Lenny was then flown by medivac to CHOP. Corinda was in recovery at Jersey Shore while Lenny was safe in the NICU in Philadelphia.

L enny had her first surgery at three and a half weeks old, an operation to repair the hole in her heart and widen her pulmonary artery. This would allow more oxygenated blood to reach her heart. Over the next three years she would have two additional procedures to insert and adjust stents into Lenny’s blood vessels to ensure her heart functioned properly.

T he surgeries were successful and Lenny’s heart has been patched and repaired. She is a normal, active, eight year old child who participates in ballet, soccer, and even dabbles in recreational tee-ball. She enjoys spending time with her older brother Liam, who Corinda describes as a “compassionate, nurturing, a nd empathetic” older sibling to Lenny. Lenny has faint scarring and a bump on her chest, reminders of the treatment that saved her life. When other kids ask about her scars, Lenny confidently informs them that she has a “special heart”.

She will continue to need surgical intervention throughout her life, including a procedure during her teenage years to replace one of Lenny’s heart valves with an artificial one, which will then need be replaced every five to seven years.

C ritical breakthroughs in technology and treatment are occurring on a regular basis – including a just announced artificial valve that “grows” along with the p atient – and these medical advances give Corinda cause for hope. She is quick to say, “the science is astounding!” But the most critical message that she wants to impart this American Heart Month is the need for awareness, fundraising, and continued research. One in every hundred children will be born with congenital heart defect, that is nearly 40,000 c hildren per year. At the time of this article’s writing, most newborns are not screened for a CHD unless they are high risk, display symptoms, or have a family history of CHD. Fetal echocardiogram scanning remains the best way to identify a CHD during pregnancy, allowing for a t reatment plan and immediate care as soon as the child is delivered. The cost of providing an echocardiogram means that hospitals tend to offer them only when there is a direct need, but for Corinda and other heart moms like her they are an obvious and crucial tool to ensuring early intervention for children like Lenny who are living with a CHD.

The Importance Of Community

As the parent of a child living with CHD, Corinda found herself in need of a community. She found that support c oming from two places. First, after researching online, Corinda became connected with Philly Heart Moms , an online community of parents of children with a CHD. Here Corinda was able to learn more about CHD treatments, practitioners, and the latest research, but perhaps more importantly she was able to share her e xperience with other moms who were walking the same path. An emotional rollercoaster to be sure, there have b een moments of great sadness – such as when a child of a Heart Mom loses their battle with CHD, and also moments of great joy – for example when a new treatment is developed or a child receives a necessary heart transplant. Corinda remains a ctive in the Philly Heart Moms group and says she will be forever grateful for the support they have provided her.

The Bravo-Smith family were also supported by their hometown friends and neighbors. “The Red Bank community really stepped up for our family,” Corinda shared. “I almost felt like I was living i n a movie the way our neighbors banded together to attend CHD walks, organize fundraisers, and help provide for my children.” This was particularly true in 2019, when Corinda’s husband Matt was diagnosed with a rare form of cancer. Matt passed away from his illness later that year. Members of the Red Bank community stopped by regularly with food for the family and teachers at Liam a nd Lenny’s school ensured that they had the extra help they needed to stay on track with their education.

WHAT’S NEXT FOR THE BRAVO-SMITHS

At this time there is no cure for CHD, only treatment and therapeutic options. Like other heart moms and dads, Corinda recognizes that this is going to be a lifelong commitment. Her little heart warrior Lenny is her joy a nd her inspiration on this journey. “The word I’d use to describe Lenny is feisty,” Corinda says. “This is the word that the doctors and NICU nurses used to describe her in the hospital. They told me it took three full-grown doctors to place baby Lenny in the NICU incubator because she was grasping so securely on the sides. She’s a fighter.”

C orinda has returned to her first professional passion – teaching theater. Corinda felt inspired to follow her vocation in the way that made the most sense for her family. She realized that she wanted to set an example for her children, to have them see her living her best self and doing the things that she is passionate about.

T his passion seems to have passed on to her son Liam, now 16. Though he originally denied having an interest in acting, Liam just finished performing in the Two River Theater’s rendition of “Romeo and Juliet”. Liam p ortrayed the leading role of Romeo.

A s for Lenny, her mother has recently encouraged her to attend a local summer camp for children and adolescents living with a CHD. Lenny is carefully discerning that while in the meantime enjoying her friends, her family, a nd her afterschool activities. When asked what she wants to be when she grows up, Lenny responds, “a veterinarian”, which makes her mother very happy. “We are seeing the first generation of CHD heart warriors live into their twenties and thirties,” Corinda relays with hope. With continued research and advances in screening, there’s no reason to think that people w ith a CHD won’t experience normal lifespans in the years ahead.

For more information about Congenital Heart Defects, you can visit the American Heart Association (www.heart.org) or the nonprofit Mended Little Hearts (www.mendedhearts.org).

How The Community Can Help

Corinda is frequently approached by people wanting to know what they can do to help. Awareness remains an important first step. This can be accomplished by organizing and attending CHD walks and by using social media channels to share accurate information about CHD. Early screening is the best way to diagnose CHD early-on and enables parents to develop a treatment plan with a pediatric cardiologist. Parents who are expecting a child should ask their doctor about receiving an echocardiogram and also inquire about screening a newborn child before being discharged from the hospital. Advocates can lobby school districts and other public entities to increase the number of automated external defibrillators (AEDs) in schools and public buildings. These machines are incredibly important for assisting those with CHD who experience sudden cardiac arrest. Heart transplants are frequently required to treat CHD, so community members can do a tremendous amount of good by registering to be an organ donor.

But one of the most fundamental things that supporters can do involves the “F-word”: fundraising. Money is needed to advance the research into new procedures, medical devices, and improved screening methods. Corinda recommends donating to trusted organizations like “Mended Little Hearts” or contributing directly to hospitals with cutting edge pediatric cardiology departments like Children’s Hospital of Philadelphia, Boston Children's Hospital, Texas Children's Hospital, or Stanford Medicine Children's Health Center. Corinda points out that most of the money going towards heart related health is directed towards adult cardiological issues. Earmarking some of those funds towards pediatric cardiology research and development will go a long way in improving the lives of children with a CHD.