Congenital heart disease is the most common birth defect in the United States and worldwide. One in 100 people are diagnosed with CHD and nearly 40,000 babies will be born with CHD in the United States this year.
Despite these profound figures, there is little transparency around congenital heart disease. The lack of education, advocacy, and awareness for this condition leaves patients feeling helpless when they receive the diagnosis. Alexsis Hall has a mission to shine a light on CHD. She, alongside others in the CHD community, seek to spread awareness and offer support to those impacted by the condition.
Alexsis Hall has always called this section of the Ohio river home. She grew up in Metropolis, Illinois, where she met her husband, Tyler Hall. The couple stayed close to their hometown, settling down in Paducah, Kentucky. They planted roots in the area and decided to start a family. On October 11, 2016, Alexsis and Tyler Hall welcomed their baby boy, Nash, to this world. That day was the start of a beautiful, bittersweet journey for the Hall family.
Alexsis was unable to hold her baby for the first eight days of his life. He had his first open heart surgery at just 56 hours old on October 13, 2016. Nash Hall was born with seven different congenital heart defects.
- A Tricuspid Valve, a heart condition in which the valve between the two right heart chambers, right ventricle and right atrium, does not function properly.
- Transposition of the Great Arteries, a rare heart defect in which the two main arteries leaving the heart are reversed.
- Ventricular Septal Defect, an abnormality in which there is a hole in the wall that separates the two lower chambers of the heart.
- Pulmonary Stenosis, when the pulmonary valve is too small, narrow, or stiff.
- Hypoplastic Aortic Arch, a blockage in the aorta, the main conduit of blood from the heart to the rest of the body.
- Bicuspid Valve, when the aortic valve has only two small parts, called leaflets, instead of the normal three.
- The most serious of them all, Hypoplastic Right Heart Syndrome, in which the right-sided structures are underdeveloped or not formed.
Each of these individual conditions are extremely serious and present a variety of challenges. The Hall family was facing all seven simultaneously.
Months before, Alexsis was having a perfectly ordinary pregnancy. This was the couple’s first child and they were excitedly preparing to start their family. Neither Tyler nor Alexsis had any experience with this condition. Alexsis describes how she had never even heard of CHD before Nash. At the 20-week mark of her pregnancy, she went in for an important ultrasound. It was the day they would be discovering the gender of their baby. Instead, the ultrasound revealed frightening news. There were abnormalities in Nash’s tiny heart. From their discoveries, Nash’s heart was only half developed. Alexsis describes how helpless she felt in that moment. She goes on to explain how incredibly supportive and comforting her OB was, but she had no idea what would happen next. Alexsis was referred to Dr. Thomas Moore Jenkins with Norton Children’s Maternal – Fetal Medicine here in Paducah. The Paducah community is fortunate to have the Norton cardiology department, as they can provide specialty care typically found in larger cities. They provided support to Alexsis and Nash until his birth.
Due to the anticipated complications, the Hall family had to travel to Louisville for delivery. Alexsis explains how they were fortunate to discover his heart defects early, as most are missed until birth. This allowed them to prepare for what was to come, although nothing really prepares a mother to send her child into surgery.
At just 6 pounds 10 ounces, Nash was taken into his first open heart surgery. His second open heart surgery would be just a few months later, March 21, 2017. Nash’s most recent surgery was August 31, 2020. Alexsis explains, “these surgeries are an attempt to rewire half of his heart to work properly. Right now there are no other surgeries expected, but that could always change.” Each time they send their little boy into surgery, there is a heavy emotional weight. With Nash now being old enough to somewhat understand what was happening, the most recent surgery was the hardest for the family. However, this last surgery was transformative. He can now run outside and ride his bike without completely losing his breath. He does not get as exhausted and his oxygen levels went from in the 70s to maintaining in the 90s. Alexsis describes how they are adjusting to this new normal, “you get so used to monitoring everything and now he just wants to run.”
This entire experience has opened Alexsis’s eyes to a world she never knew existed. She now sees a need, not just nationally, but in our local community. While her and her husband’s families are incredibly supportive, Alexsis needed connection to individuals with a similar experience. She discovered those support systems online; Heart Mom support groups, Facebook pages, and Conquering CHD. Conquering CHD is an organization made up entirely of CHD patients, families, and medical experts that seeks to improve and expand congenital heart disease education, patient support, research, and advocacy for policy change. They provide free diagnosis kits and prenatal bags. They also provide information on care options and offer support meetings online. The support meetings are how Alexsis first got involved with Conquering CHD. These groups were powerful for her and led her to get more involved with the organization. She is now the Chapter Hospital Coordinator for Conquering CHD – Kentucky. She says, “I want to be the support person I needed. It can be very isolating.” She tells the story of a woman that joined a virtual support group meeting while in the hospital. This woman had just received the news that her child had CHD and did not know who else to turn to. After seeing a post from Alexsis, she sought comfort with Conquering CHD. Stories like this are why the organization is so important. They provide hope at the most challenging times. This is also a personal mission for Alexsis. She wants to use her experience for good.
Alexsis encourages people to be more aware of invisible illness. “Nash looks and behaves absolutely normal, but he only has half a heart.” Awareness goes beyond something being right there in front of your face. Alexsis is able to use her personal experience in her work with Conquering CHD. This organization serves as a beacon of hope for CHD patients and families.
Their research, advocacy, and patient resources would not be possible without funding. Fundraising events are vital to their mission. However, with their community being high-risk and the unpredictability of the COVID-19 virus, fundraising efforts have slowed. They hope to have a walk this year, October 1st, 2022.
