Story
Name
Collins Arnold
Injury/Illness
Chronic Illness
My name is Collins Arnold and I was born with a rare, congenital heart defect called hypoplastic left heart syndrome (HLHS). I have had HLHS my whole life and this happened when I was in my mom's tummy. The left side of my heart is underdeveloped which affects the blood flow of the heart. This cardiac defect is not compatible with life and requires a series of three palliation open heart surgeries in the first couple years of life. There is a high chance that I may also need a heart transplant some time down the road.
At 2 weeks old, I had my first of three open heart surgeries. I got a feeding tube for nutrition as I was unable to nurse or take a bottle as it was so much work and energy for my little body to do. It felt like running a marathon! I finally got to go home and meet my dog, Tucker, after spending 96 days in the hospital. I was home for a short 7 weeks before I was life-flighted 5 hours away from home where they found that the shunt in my heart had a blood clot causing my oxygen levels to be dangerously low. I was able to return home after I got a stent placed, but had to return 10 days later after I developed blood infection that attacked my heart and the only functioning valve in my heart. I guess they call this endocarditis.
I had my second open heart surgery on 11/14 and have had several complications. I was placed on ECMO on 11/20 and have been on it ever since. I have also had a breathing tube in which I hate. My mom is a physician assistant and has been unable to work since 4/2023 as she has not left my side. My dad is an industrial mechanic and has to drive back and forth. I really want him to stay here with me and mom but they tell me there are bills that continue to accrue and they also need something thats called health insurance. I have been so happy that my parents have been able to be with me but I know they are stressed financially and are trying to keep up on bills back home. Thank you in advance for your love and support!