My name is Henley Loren Beebe, I’m 9 months old, and I was born with a congenital heart defect. I had a mid-muscular VSD, a large hole in between the chambers of my heart. My heart was working five times harder than normal because blood was pumping through the hole, which also caused an excess of blood to be pumped into my lungs.
Due to my heart condition, eating was a huge challenge for me. I didn’t have the strength or stamina to eat and at 4 months of age, I was admitted to Phoenix Children’s Hospital (PCH) for a week getting a nasogastric (ng) feeding tube. A few weeks after getting the feeding tube, I was back at the hospital for a heart catheterization procedure, so the doctors could learn more about my heart. Then, at 7 months of age I had open heart surgery to put a patch over my hole. I was in the cardiac intensive care unit at PCH for 11 days because I had to be intubated twice and went through some major withdrawal symptoms when the doctors took me off the narcotics. Since coming home from the hospital, I have successfully stopped taking all pain meds, heart meds, and lung meds. My heart looks healthy and strong and I am currently taking only two medications to help with my reflux issues and my biggest struggle is learning to eat on my own again. I’m hoping to be off the feeding tube as soon as possible!
Being born with my heart condition has shown me that I can overcome obstacles and I can persevere through the challenges I’m faced with. I’m also fully aware of the immense amount of people who love, support, and care for me. My heart condition is a part of me; but it does not define me. I am happy to share my story because I want others to know you are stronger than you think. If you set your mind to something and work hard enough, you can reach your goals. But the challenges will always be there. Every day is a challenge and every day I’m faced with new challenges. However, every day I reach new goals and I get a little bit better. Every small step in the right direction adds up until I’ve passed a major hurdle in my life. If I can do all this before my first birthday, you can do it too!
Written January 2019
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