Story of Jenn Costantino

 

Jenn Costantino is a congenital heart disease survivor. She was born with Tricuspid Atresia and needed multiple operations to repair the heart defect. Jenn is 32 years old now and she is a successful artist. Her message: Never stop believing in yourself or your dreams. Read Jenn's story in her own words here.

 

 

 

My name is Jenn. I am 32 yrs old and I was born with Tricuspid Atresia. As a baby I did not have my tricuspid valve and an insufficient amount of oxygen circulating. I was also referred to as a "blue baby." My lips, toes, fingers everything was blue. At 2 and1/2 months old I had a Blalock-Taussig shunt in an effort to receive more oxygen. It was hard keeping up with other kids and I could rarely play outdoor games because I would always fall down and get tired very easily. I spent most of my time drawing instead.

 

At 8 years old I went into the hospital to receive an open-heart surgery called the 'Fontan Procedure'. It was the first of its kind. It would help create a passageway for blood and oxygen around my heart and to my lungs. I don't remember much of the surgery, except for the fact that I was receiving a lot of presents from visitors whom I loved. I was home schooled during recovery and it seemed to go pretty smoothly. I stayed in pretty good condition for a while after my surgery. During high school though, I started feeling a fluttering in my chest and I would get very dizzy and nauseous. One time I remember I blacked out. When this happened I would have to be rushed to the hospital to be defibrillated. Basically my heart would have to be shocked back to its normal rhythm. This happened several times within a few years of each other. It was due to the extra scar tissue in my heart after my surgery. I still was very much able to live a normal life though. After high school I went to Parsons School of Design in NY to study Fashion Design. After Parsons I began following the rest of my dreams, which were singing and acting. I was in an acting program and studying voice. Breaking into the industry was my main concern and nothing was going to stop me!!

 

The summer of 2001 I was 22 years old and decided to go on vacation. First I was going to go to San Francisco to visit a friend and then to Las Vegas for a few days with a few other close friends. Well, it was probably my first trip as an adult by myself and I was so excited to really get out there on my own. I remember my mother gave me a note before I left, telling me how proud she was that I had gone through so much and that I was as strong as I was. So I went to San Francisco, without a care in the world. My second day there I noticed that I felt something funny, and I thought maybe it's a palpitation. I was sure it was just the crazy hills in San Francisco. They are exhausting! Well, the third day, my friend had to work so I took the bus to the museum. The whole time on the bus I just kept thinking that something didn't feel right and I was becoming so dizzy and nauseous. I knew I was in flutter. So now I'm on the other side of the country, wondering what to do? As soon as I got off the bus, I got back into a cab to go back to my friend's place and was just terrified. I didn't have a cell phone yet so I couldn't call him. I just prayed and prayed that I would make it back okay. I was alone and didn't know what could happen. I made it back to his place and called my doctor who I have been with since I was born. He said that his friend is at the local hospital and she was going to take care of me. I didn't call my mother because I knew she'd be on the next plane. I had to get shocked back to regular rhythm. It's like getting your nails done quick and easy, right? So my friend stayed with me at the hospital and the next morning they shocked me back. That was also the day I was due to catch a plane for Las Vegas. I begged the nurses to let me go and promised I would stay calm and not do anything crazy. I just wanted to continue my vacation as I had planned.

 

So they let me go. When I got to the airport I called my mother and told her. She was upset that I didn't call her right away but I also never heard her sound so proud of me that I took care of it right away and was able to get through it alone. As soon as I got on the plane the flutter started again; however, it just wasn't as bad. I managed to relax in Las Vegas and made it back to New York safely without having to be admitted into a Las Vegas hospital. Once I got back I went to my doctor because the flutters wouldn't stop and he told me I needed to have a pacemaker implanted. I was devastated. If I need a pacemaker at 22, what is going to happen to me at 60? My Grandmother has a pacemaker, not me! I went in for further evaluation and it turned out that I needed a revised Fontana Procedure. So I needed a third open-heart surgery. The doctors told me I could live with the irregular rhythm for awhile if I wanted to wait. But why wait? My life, my dreams, everything was disrupted at this point; I might as well get it over with. My surgery was scheduled for September 13, 2001, two days after 9/11. Once 9/11 happened they moved it to the next week. So I went in and had my surgery. It was not like when I was eight. I liked it when I was eight. My parents would have to hear everything that was going to be done to me and then they would tell me that everything was going to be okay. Not this time. I had to listen word for word on everything that was going to be done to me, and I had to give the okay. It was the scariest time of my life. I thought I was done with surgeries. I was so scared. While every other New Yorker was thinking about 9/11 and what would happen to New York, I thought about recovering and getting back to doing what I love in New York. Dealing with 9/11 and open heart surgery at the same time was not easy at all, but like we are always told, there is a reason and a plan for everyone. I got through it. I was out of the hospital in 8 days and back to acting classes within 4 weeks. I spent the rest of the year healing, auditioning and focusing on my voice.

 

This past summer I had to have a battery replacement for my pacemaker. I told the doctors though I had to finish recording my debut CD first. So 2 days after recording my last song "Everywhere You Are," I went in for surgery. With every surgery there is fear; however, I know that I will pull through because I want to be sure I can go back to living life and doing what I love which is music! That's exactly what I did. Only 3 weeks after my surgery I sang "The National Anthem" at Keyspan Park in support of The American Heart Association. It was probably the most difficult song I ever had to sing, not because of the high notes lol, but because of the strain that my body was going though. I did it though and proud that I pushed myself to make it happen!

 

I'm not telling my story for people to feel bad for me or to gain sympathy. We are all born with issues, and all for a reason. I want to get my story out there to inspire people. I'm finally at a point in my life where I feel healthy enough to do just that. Since my 2001 surgery I have been working in the fashion industry, done background work in television and movies, performed The Variety Children's Telethon and modeled on Project Runway to raise heart awareness. Most importantly, I followed my dream of singing and recorded my debut CD "The Best Part of Me" in which I wrote 7 out of the 10 songs. Life is such a gift and, if you don't treat it as a precious jewel that was given to you, it will just go to waste. I am 32 years old with a pacemaker, but I also have talent, and drive and people who love and support me. I must also mention that I am now in perfect health!! I can go out dancing all night, travel wherever I wish and feel free to try things I  that I used to be afraid of exposing myself to. I'm not sure what my future has in store for me, but for now I will focus on my dreams and bringing inspiration to others whether it's through music, art or simply sharing this story with others. I am living proof that "Miracles Do Happen!" Never stop believing in yourself or your dreams because I will never stop believing in mine.

 

 

To learn more about Jenn Costantino, visit her Facebook page here. Learn more about Tricuspid Atresia at the US National Library of Medicine here. More information about the Fontan Procedure can be found here on the website of the Cincinnati Children's Hospital and Medical Center, a member of the Congenital Heart Surgeons' Society.