First time parents Erica and Tyler Thayer were devastated to hear the dreaded phrase “there’s something wrong with your baby’s heart” – a short, concise sentence that would cause any parents’ stomach to drop, whether it’s their first child or not. While facing the difficult task of making overwhelming healthcare decisions for their son Calvin, they researched Congenital Heart Disease (CHD) online, spoke with doctors, and sought out advice from other parents with children with CHD. As they went through the scariest nights of their lives waiting for Calvin’s surgeries, they passed the time by imagining ways to find better treatments and help the 40,000 babies born with CHD birth defects every year. So, from the waiting rooms of Vanderbilt Children’s Hospital, Project Heart was born.
CHD is the most common birth defect in the US and can cause different types of defects such as problems with the heart valves, holes in the heart walls, or bad connections between the blood vessels. In Calvin’s case, he had Tricuspid Atresia and Transposition of the Greater Arteries – which means that he had no Tricuspid valve leading into his right ventricle, and the position of his Pulmonary Artery and Aorta were reversed. Just thirty years ago, babies with these defects only had a 30% chance of seeing their first birthday. Now, 69% of children with complex CHD get to see their 18th birthday.
Project Heart stands out from other CHD-related foundations because they are solely focused on raising money for CHD research. Breakthroughs in CHD research along with new and evolving surgical techniques have led to an increase of 40% in survival rates over the past 2-3 decades. Project Heart hopes to continue these efforts by helping fund research efforts to develop less invasive procedures that can lead to shorter hospital stays, increased survival rates, and better quality of life for those with CHD. Some of the ongoing efforts in CHD research that Project Heart helps fund include using stem cells to grow valves or vessels and the improvement of ventricular assist devices for children to help their bodies during the wait for a heart transplant.
Before Calvin, Erica and Tyler didn’t know much about CHD. It’s an invisible illness with few outward signs and often escapes the spotlight by getting grouped together with the umbrella term “heart disease”. While researching information on their own, they found a lot of support through online communities by connecting with other parents who have kids with CHD. Erica and Tyler met with parents of a 6 year-old boy with a similar heart condition to Calvin and found it to be extremely encouraging – not only because their son was running around and healthy, but also because they could provide advice and share experiences as someone who had been in their shoes and could understand what they were going through.
Erica said her best advice for other parents of a child with CHD is to be your child’s best advocate. She researched surgeries online, tackled complex articles in medical journals, compared surgeons from all around the country, and actively participated in Calvin’s healthcare plan. While her inspiration for Project Heart was Calvin, her overall goal for Project Heart is to help other 1 in 100 children in their battle against CHD by improving upon the life-saving treatments available. Luckily for Calvin, after 87 nights in the hospital, he is now happily and healthily approaching his 2nd birthday – and about to tackle a whole new challenge, being a big brother!
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My baby is suffering from congenital heat by born. I searching a good quality hospital for his best treatment.
hi good night, I hope this message some how reaches anyone who is willing to help..i am 35 years and just had my first baby (girl) born with congenital heart disease and trust me when I say it a difficult time for me.
1) because I live in what you call a 3rd world country (Trinidad and Tobago) and 2) because my baby is four days old and a simple EKG/ECG cannot be done for lack of machine in the facility where she was born. You see where she need to have this test done to determine how critical her CHD is on another compound and she is not stable enough to move, so i’m here frustrated and playing the waiting the game and hoping that my beautiful princess holds on. Help me please