Jessica Goffard living with Tricuspid Atresia with Ventricula Septal Defect, Atrial Septal Defect and Mitral Valve Prolapse

Jessica writes about how she felt growing up with her CHD’s and how she came to terms with them.

My name is Jessica Goffard. I was born early October 1989. My mom’s pregnancy was normal. Though the doctor suspected something might have been wrong. Every check up, my mom said “he would listen so intently like he was hearing something weird”. But it was 89, and the tests were not that good, so he never said anything. My birth was perfectly normal. My family was so happy, my big brother was excited to be a big brother. My grandparents were so happy about there first granddaughter. It was normal.

It was a few hours before my mom suspected something was wrong. I wasn’t as pink as a newborn usually is. My mom was trying to nurse me and I wouldn’t wake up enough to eat. The nurse was giving my mom a hard time, telling her she was doing it wrong and she just didn’t know how to nurse a baby. My mom threw a fit, she already had a son, she knew what she was doing. So eventually nurse took me away to do some tests. That’s when I woke up enough to cry, and I turned blue. That’s when I was diagnosed with Tricuspid Atresia, with a ventricular septal defect (VSD), atrial septal defect (ASD), and mitral valve prolapse (MVP). That night my parents
watched the ambulance take me away to a hospital in Chicago. I had my first surgery a shunt, at 1 month old. My second was another shunt at 11 months old. Somewhere between my birth and age one, I had a balloon septostmoy to make the hole in my heart bigger.

When I was 1 ½ my mom noticed I wasn’t doing as well as before. She called my cardiologist who said I was just seen and that I should be fine. But he decided to see me after my mom insisted. I wasn’t suppose to have my Fontan until I was 3, but my body tried to heal itself so I had it at 1 ½.

My childhood was normal . I had friends, and I had fun. But I also had more, I had medicines everyday, I had cardiologists at least once a year. I also had scars. I had heart monitors, and tests that most children never even knew existed. Tests on my stomach because they thought the surgery may have caused it to flip. I also had stress tests to see if my heart was okay, and blood work.

I never really talked about my heart much. My parents raised me normal like my big brother, I never thought it was a big deal. All I knew was ‘I have a heart condition’. I loved being able to miss school, no matter how horrible the cardiologist was, for me, it was better then school, because I got to spend time with my mom, and I didn’t have to think. One year, I was having issues with palpitations so my cardiologist sent me home wearing a holter monitor, boy do I hate those! It was a horrible time, I had to go to school the next day, and I was still wearing it. My mom wrote a note to the teacher to just let her know what it was, so she wouldn’t wonder. I think maybe I was in second grade, some where around there. My teacher decided it was something the class needed to know. She told the whole class about my heart monitor. She then proceeded to ask me to stand up and show everyone. When I refused she had everyone gather around my desk and look. I felt so bad, I felt like a zoo animal.

I also got sick when it was really hot. One day I set up a lemonade stand with my brother and 2 next door neighbors, my best friends. It was so hot and we had only had one person, and I was feeling sick, so I decided to go inside to the nice air conditioned living room to rest a little bit. When I got back outside I was told that I missed the lady who gave quarters to everyone of them. That was a big thing for a little kid. I felt bad that I had to miss that cause of my heart.

When I was 11 my dad died and we moved away to Cape Cod, and I got a new cardiologist, who wasn’t nice. Then after 2 year we moved to Idaho, and again another horrible cardiologist. I decided that I didn’t need them, I was so tired of them, being horrible and mean. I was tired of the stress tests. Plus the doctor dropped me because I canceled an appointment because of snow. (I didn’t know they can do that!).

My teenage years were hard. I refused to be different. I thought that if I ignored it long enough it would go away. I hated not being normal. But I never could actually get away from it. Never. I tried to never talk about it unless I was really close to the person. But one day in the high school hallway a boy, I had no idea who he was, came up to me and asked “is it true you only have half a heart?” I walked away bawling and went and found my brother and asked him who the hell he told. It was hard on me. I hated not having control, so I controlled the things I could. I began to skip meals, and only have a strict diet, and when it got so bad, I began throwing up. I also began cutting, I wanted a reason to feel pain. I went to a behavior health center for a week. It didn’t help so much. When I was 17 my heart began to go downhill. I couldn’t exercise like I use to, and the hit made me unbelievably sick. Walking outside gave me rapid heart beats and a killer headache. It eventually got to the point that walking room to room made me out of breath. And the pain was excruciating.

When I turned 18 I moved out and decided that I should probably get my heart checked. I started to come around and decided I could no longer ignore it, it’s who I am. So I got a new cardiologist and had the many tests (EKG, ECHO, blood work) done. At my second appointment I found out that I had atrial fibrillation. It terrified me. One day, while I was babysitting I got a call from another cardiologists office saying they wanted to set up a CT scan. I had no idea who they where, so I called my cardiologists office. They told me they recommended me to a pediatric cardiologist because he knew more about what I had. I set up a CT scan with the other doctor. Who told me they where doing it because most children who have the Fontan need the Fontan revision. That absolutely terrified me. I went home to hug my mom. A short time later I went and had my CT scan and met with the cardiologist. Finally a nice one! He told me I needed a cardiac catheterization to see if surgery would benefit me. So I had my cath, and found out my heart was dilated and up against my breastbone. They told me surgery would benefit me, a lot.

July 24, 2009, I had my surgery. I had the Fontan revision, along with part of my heart removed because it was dilated. I also had the maze procedure to fix the A-fib, along with a pacemaker implantation. Recovery was hard, not pain wise. I found out after my surgery that I have a high pain tolerance. I was sore, and my leg hurt like crazy because they cut something when they went in with the heart lung machine. They paralyzed my vocal cord with the breathing tube, and I was allergic to the stickies from the heart monitor. I couldn’t sleep and I had no energy to do anything. But it eventually got better. I was told I might have nightmares or become depressed after the surgery. The first few months I had nightmares about heart and lung transplants. But they finally went away and was replaced with depression.

I’m doing good now. It doesn’t hurt to walk from room to room. There’s a lot of snow out here, so that hurts my scars sometime, but its not bad. I am really depressed at the moment, and I trying to get disability. I am broke, sad, and angry, and can’t help but wonder why me at times.

Though I have my moments where I’m sad and angry, I am happy to be alive. This was a life changing event for me. It showed me how serious Congenital Heart Defects were. I never heard that phrase until right before my surgery. I found out about my surgery and randomly typed Tricuspid Atresia into the Facebook search and found amazing groups. I never knew anyone with a CHD, I had felt so alone. But then I found these groups. That has made such a difference in my life. They are so supportive. And through them, I learned so much about CHD’s. I’ve learn how lucky I am to be alive. I learn how to live, I learned to take nothing for granted. This has changed me, but for the better.

Wrote by Jessica Goffard
February 2010

Jessica Goffard gave CHD-UK persmission to use the photographs on this page.