Heart Warrior of the Week | Amari Hall
Remember the CHD Warrior who was dancing just six days after a heart transplant? He’s our Heart Warrior of the Week! Everyone, meet Amari K. Hall! Amari was born on February 5th, 2001. When he was about to be discharged from the hospital two days later, a doctor noticed his breathing was unusual and sent him to the NICU for further testing. He was quickly sent to another more well-equipped hospital before finally landing at Children’s Hospital of Philadelphia (CHOP). He was diagnosed with hypoplastic left heart syndrome (HLHS).
Amari underwent the Norwood procedure – which is the first of three open-heart surgeries that are commonly used to treat HLHS – at just five days old. This surgery went well but his Glenn procedure had to be stopped because his aorta was nicked and he suffered a stroke which caused him to lose his vision for six months. They waited until he was well to complete the Fontan procedure in addition to one other open-heart surgery and multiple catheterization procedures.
Amari recently underwent his fifth (and hopefully last!) surgery where he received a new heart. Throughout all of this, Amari has spent his fair share of time in the hospital for surgeries, procedures and recovery time. The longest stay was about three months in a rehab center after his stroke. He has had countless other hospitalizations for seizures that occurred after his stroke. Right now, he is on several medications to prevent his body from rejecting the new heart, in addition to seizure medications and several others.
Because of his condition, Amari tires easily, he’s not able to perform physical activity for extended periods of time, he also cannot play sports or ride roller coasters due to the negative effects that excess adrenaline and stress can have on his heart. Amari’s family has faced many fears and worries throughout his battle with CHD. Right now their main worry revolves around the possibility that he could reject his new heart.
His aunt, Charawn, said the following when asked what inspires her about her superhero nephew:
Where can I start...? He is the sweetest little boy who loves everyone. Since he was born, he has endured so much but continues to keep a positive attitude and make everyone around him laugh. He encouraged the nurses to pray for him and he would pray for others. My nephew is my hero, he has managed to bring our close knit family even closer during this time. I think that Amari will inspire countless individuals because of all that he's had to go through. It’s hard to watch him go through everything he has endured, but he hardly ever complains of his own pain or suffering. There was one week when I was sick and couldn't visit him in the hospital. He was battling CHD, yet he seemed to be more concerned about me getting better than himself. He’s like that with everyone. That’s a lot to be said about a 15-year old that’s waiting for a new heart.
About Amari’s Heart Defect
Hypolastic Left Heart Syndrome
With this defect, the entire left side of the heart (aorta, aortic valve, left ventricle, mitral valve) is underdeveloped, essentially the child is missing half of their heart. In a healthy heart, the right side of the heart pumps oxygen-poor blood from the heart to the lungs while the left side of the heart pumps oxygen-rich blood to the rest of the body. When a baby is growing in a mother’s womb during pregnancy, there are two small openings between the left and right sides of the heart. Normally, these openings will close a few days after birth. In babies with HLHS, the underdeveloped left side of the heart cannot pump oxygen-rich blood to the body properly. During the first few days of life with HLHS, the oxygen-rich blood bypasses the poorly functioning left side of the heart through the two openings. However, when these openings close, it becomes hard for oxygen-rich blood to get to the rest of the body.
If undiagnosed in utero, the child may seem healthy for the first few days of life before exhibiting side effects like rapid or strained breathing, trouble feeding, and an ashy appearance. Without treatment in the first days or weeks of life, this condition is usually fatal. 1 out of every 5000 babies are born with HLHS every year. Those who survive the complicated process of mending a heart with HLHS will require lifelong cardiology care.