A few years ago, I met Jessica and I can’t begin to explain how lucky I am to have connected with her. I’ll definitely try. Not only is she a Congenital Heart Defect adult warrior, but Jessica has been full of a wealth of information and support for families and other survivors. She has turned her experiences into lessons for others- which in my humble opinion, has been the best of information, even compared to information I’ve received from doctors. Jessi has traveled (and still travels) to meet other CHD warriors who she calls her “heart family”. She lives with her CHDs but she never lets them own her. Jessi (as she likes to be called) is way more than her heart defects. She is funny, cool, and super-talented in photography and loves editing photos for other warriors and their families! She’s a wonderful friend, sister, aunt, and daughter (and I know that list goes on). Jessi is a true warrior in every single sense of the word. I think that if you search the dictionary for “warrior”, a picture of Jessi would be there right along with a beautiful, smiling face. She’s a good friend of mine who just happens to have half of a heart. One of these days we’ll come to her and visit.
Here is Jessi’s story as told in her own words:
“My name is Jessica, but I prefer Jessi. I’m 23 years old and I am surviving CHD. I was born October 3rd 1989. I asked my mom a lot of questions about her pregnancy and delivery with me. It was a normal pregnancy, no problems whatsoever. But now looking back she remembers her doctors would always listen to my a heart beat a little longer then normal. Maybe they heard something, but it was 1989 and they didn’t have great technology back then. Labor and delivery where normal and I was born in the early morning.
Shortly before discharge my mom was trying to nurse me and I just wouldn’t wake up and eat. The nurses told her she just didn’t know what she was doing, but I have an older brother, she knew how to nurse. So the doctors took me away and managed to wake me up enough so I would cry. I turned blue. My mom knew something was wrong when the doctors and nurses came back without me. They told her I had a heart problem, it wasn’t anything serious, probably just mitral valve prolapse and I’d be fine. I got my first ambulance right before I was even 24 hours old. When my mom finally got discharged her and my dad came to see me, and what awaited them was a much worse diagnosis.
I have Tricuspid Atresia, Severe Hypoplastic Right Ventricle, Mitral Regurgitation, 2 superior vena cavas and a VSD and an ASD. My parents were told the ASD and VSD were the only reasons I survived my birth. I had my first surgery, via cardiac catherization at 2 day old. A balloon septostomy to make my ASD and VSD bigger so the blood would continue to flow. I got to go home a week after my birth and did okay until I was 3 months old. That’s when they had to do my first BT shunt. At 9 months old I needed another BT shunt. Both were done through my back and I have scars underneath each shoulder blade. At 1 1/2 I had my first open heart surgery. I went in on mother’s day and got out on father’s day. They did the Glenn, but it failed and they couldn’t get me off bypass. So they did another procedure (this one I don’t know the name of) and again, they couldn’t get me off bypass. My heart just wouldn’t beat. They had one more option but they weren’t sure if it would work, it was so new. But it was all they had left, so they did the Fontan. Luckily, it worked and they finally got my heart to beat. But a 4 hour surgery turned into a 12 hour surgery. Because I was on bypass for so long there was swelling in my brain and I had a massive seizure and was in a coma for 2 weeks.
Its been a crazy 3 years since my last surgery. I was in a car accident in November 2010 and was told the only reason I survived it was because my pacemaker kept my heart going. The Maze procedure failed and my atrial fibrillation came back about 2 months afterwards. I had a cardioversion in September 2011 and we are watching it again and if it gets bad again we will try an ablation. It’s now called chronic atrial fibrillation. At my last appointment my doctor told me I have the best ventricle function post Fontan out of everyone he sees in his clinic, and I’m quite happy about that. I’ve been diagnosed with an auto immune disease and I’m in a lot of pain, but I try to keep going.
My cardiologist says it’s just a matter of time before the heart failure comes back and I’ll need a transplant. But I’m taking it one day at a time. I’m enjoying my life. I’m trying to get disability because as much as I’d love to work I know I can only do it part-time. I love meeting new CHD families and go to visit children in the hospital whenever I go for my appointments. I also love meeting them outside of the hospital too. I’ve been told I give them hope and I am proud of that. They help me feel not alone. I’m enjoying being an aunty and hope to sometime become a mom (through adoption) myself. I love my life and am thankful for the doctors who gave me a chance to live it.”