Meet First & Second Generation CHD Survivors & Experts

who tell their stories of being born in a time

when the world was not built for the weak to survive. 

Yet here they are knocking down barriers and squashing statistics 

while blindly teaching themselves, loved ones, CHD Parents,

doctors, and the public how they have created a life

with little to no resources.

I'm busy working on my blog posts. Watch this space!

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There are so many cliche sayings about being strong and surviving the life you were given. I get angry with those kind of sayings... Yes, I’m thankful for every day that I’m blessed with, but it doesn’t take away the pain and struggles I go through daily... I was often made fun of and would come home from school crying on a regular basis due to the teasing, because I had "purple lips." I missed a significant amount of school due to tests and surgeries... I admit some days I’m a great advocate for CHD and other days I’m resentful...

Physically I am doing okay right now but mentally is where I am struggling. My anxiety has been higher in the last couple of years which I have been taking medication for. I think the medication helps but I also try to exercise 6 days a week and do breathing meditations when I can. My mom once had the anesthesiologist play a meditation while I was being put under and I woke up the calmest I ever had. My advice to CHD parent’s (including my own) is to ...

ASD repair was break through treatment in Peru in 1975. They saw other CHD kids at that same hospital die. They heard me cry that I didn't want to die like friends I'd made at the hospital. .. Thirty-eight years after my surgery when walking on the streets of NYC with my 2 year old, I fainted. .. ASD repair was break through treatment in Peru in 1975. They saw other CHD kids at that same hospital die. They heard me cry that I didn't want to die like friends I'd made at the hospital. ..I wish I'd developed the habits of being active as a child so that they can carry me in adulthood.

Meet Heather!

Please take a few moments to watch Heather's video as she shares her brief, yet powerful story.

This woman is a CHD Pioneer who was the first single ventricle patient to have the original Fontan procedure in 1980. She is a courageous advocate with relentless passion to pay it forward to the CHD Community.

Heather has dedicated her life for many years to helping CHD survivors, specifically teens and young adults, be comfortable in their own skin, learn how to love themselves, and be proud of who we are!

Learn more about Two Hearts and how your CHD Teen can benefit from the life saving work they do, especially if you are in the Denver, CO area.

In honor of her 50th birthday, please consider donating to her organization, Two Hearts!

To learn more about the 50th Anniversary of the Fontan operation, click here. 

March 25, 2019

My name is Joey Williamson. I was born with Congenital Heart Disease in the form of Pulmonary Atresia, VSD. I also had other birth defects such as my liver was outside of my body, and clubbed feet. I was born on February 4th, 1985, at Butterworth Hospital in Grand Rapids, MI.As an adult things did change. My energy declined in 2002 and 2013. I had a very hard time functioning and almost had no energy leading up to the surgeries. In both 2002 and 2014 I had conduit replacement surgery. A couple of years after I had my 3rd open surgery in 2014, I discovered I had Sleep Apnea. I am very fortunate now to have a sleep machine which improved my overall health and energy. I currently do not take any medications.  In the warmer months I am at the gym three to five days a week. I usually work on abdominal muscles and then 30 to 60 mins of cardio. I tend to eat a lot of protein and drink a lot of water which helps my kidney function. My favorite quote is "Controversy Doesn't Come Wit...

I'm Michella from the Netherlands and live in a village nearby Utrecht. I’m born at May 30 in 1987 with Truncus Arteriosus 1 and ASD. My parents didn't know about my heart condition. The obstetrician has heard something during pregnancy, but after a second opinion in the hospital, they said that I was a healthy little girl. I'm born in the hospital and the obstetrician did want that a pediatrician should listen to my heart either. And still I was a healthy baby girl. In the few months after my birth I did sleep a lot (my parents has to wake me for nurture), and when I got nurtured, my head was sweaty. Two months after my birth my weight gain  was a 100 gram. Finally they did send me to the hospital and after a first check, they send me to cardiology. It was 1987 and children’s heart surgery was just started in The Netherlands. The hospital was a children’s hospital in Utrecht. My heart condition would be too bad to get a surgery. After three weeks in hospital my parents co...

As part of CHD Legacy's stories, I asked each writer to include advice to CHD Parents, Teens, Adults, or all. He includes them all, including sex advice for the Adult CHDers! This is a must read! Ryan's passion to help the current and future generations of CHD shine through. I encourage all writers to express themselves as they are and speak their truth, with what they are comfortable with sharing. Ryan is a perfect representation of what CHD Legacy stands for: being authentic, speaking about taboo subjects, and expressing the raw reality of living with CHD. This is how we create real change. "I’ve had about 6 surgeries all open heart .. I’m a very active fairly athletic person I walk a lot and did sports in middle school. I’m so glad I’m as active as I want to be as I grew up and while I still can and its one of the majority of things that makes me feel not just myself/grounded but feel human. .. As a hobby I Ballroom dance when I’m in the mood I recommend it its fun and...

The physical scars have healed way sooner but the emotional healing continues on. .. There is a sense of loss for me as I realize I am different from others and that I live with limitations. .. I chose to seek out help of a therapist, who has helped me tremendously deal with all that goes along with having open heart surgery and living my life. Truth be told, anxiety and depression have been present for as long as I can remember, however markedly worse since my last surgery. .. The physical scars have healed way sooner but the emotional healing continues on.

February 16, 2019

Like most humans, I suffer from depression, anxiety and PTSD, but the struggle that I am facing now would be recovering from a miscarriage. I think the best advice that I could give to both CHD parents and CHD children is that when it is time for the CHD child to start advocating for him or herself at the doctor’s office, the parent should let them! .. “Her life was a circus. So she decided to enjoy the ride.” - Unknown. Because growing up with Hypoplastic Left Heart Syndrome is definitely an adventure in and of itself.

February 15, 2019

My name is Caitlyn MacKay. I was born with Truncus Arteriosus. A few years ago I found “clean eating." I have 2 degrees; a bachelor’s in psychology and master’s in healthcare administration. The only thing I wish hospitals would do better is care coordination between different locations.

I am currently expecting my first child. I am 12 weeks along and there's been a set back...The aneurysm was found when I went to my 8 week ultrasound. I hadn’t had an echo in a year so it happened sometime in the past year.They say in women if it grows to 5 cm or bigger it can rupture at any time. So right now I'm on extra watch. With the baby I'm on high risk and we’ll try to get to 20-24 weeks, then they may take the baby.Then the next step is to talk to the surgical team… they will have to replace the entire aortic valve. With CHD surgeries, we all often have to wait until we’re sick enough to have surgery, yet healthy enough to survive, so it’s hard.You can get through anything. It's a hard journey but it the end, it's all about the fight in us!"In the hour of adversity, be not without hope". To me it means no matter what life throws at you, nothing is impossible to overcome!

I was born in 1986 and all was expected to be as normal as any baby could be. Instead, I had several complex congenital heart defects including a single ventricle with double inlet left ventricle, transposition of great arteries, persistent left superior vena cava, patent ductus arteriosus, and more.

All of my surgeries have been at Texas Children's in Houston. The Fontan at age 3 ½ and the Fontan Revision at 28. It’s been almost 4 years since my Fontan revision and I’ve got a good grasp on my health.

I’ve learned to listen to my body, know when it needs rest, and how my heart has impacted other parts of my health. I’ve started to have my liver watched through findings at TX Children's and so far, my liver looks great.

I am currently only taking a baby aspirin and Propanal every day to manage my Tachycardia. I drink water like it is going out of style! I also get very hungry and constantly have to have snacks. I follow Trim Healthy Mama eating plan and my blood work has never looked bette...

February 14, 2019

I just slowly over the years noticed little changes in how much I was able to do. I ignored it at first just like any other kid but then it became a real problem when I would be practically hyperventilating trying to make it to class on time. I finally spoke up but when I did I felt as though my concern wasn’t heard ...There is a whole stigma in the general population when the words like Illness or Disability come up. Once people find out "something is wrong with you" then they start treating you differently. I've always told myself and others that if I had been given a choice to have all the surgeries, all the wires and tubes, all the physical and mental pain, or to be a "normal" healthy person, I would still choose to be Chronically Ill. I know that might seem crazy, but think of it this way, I wouldn't have all the knowledge I've gained from learning about CHD, I wouldn't know all the wonderful people I know, I wouldn't have the most amazing...

February 14, 2019

Some people treated me like a piece of glass, as if at any given moment my heart would burst or something. I participated in gym without any problems, I just wouldn’t run the mile. I just kind of held my head low and didn’t make much noise in high school. I knew that I was just there so that I could go somewhere else. While in high school, I did find out I had a natural talent for art. I took as many art classes as I could and knew that I wanted to pursue art as a career. It wasn’t until after college that I started feeling the effects of not taking care of myself. Everything I felt; A palpitation, a panic switched turned on and I would call 911. I was suffering from severe health anxiety. I found myself in the hospital 7 times in a year and a half only for the doctors to find nothing wrong. I was constantly afraid of my own heart. I developed a tick where I would check my pulse every minute to make sure my heart was beating. It was uncontrollable fear that my heart was about to give...

February 13, 2019

I am not able to physically have children, so my husband and I are praying about starting our family through the adoption process.  We know the Lord has some amazing things in store, and we are anxiously waiting for Him to reveal to us the next step. Psalm 139:14 says, “I praise you, O Lord, for I am fearfully and wonderfully made; Your works are wonderful, I know that full well.”  This is one of my favorite Bible verses of all time. It is a wonderful reminder that my broken heart was not a surprise to the Lord. The anatomy of my heart was not an accident, and the Lord has an amazing plan for my life. A lot of people ask me what I would change about my life or growing up and I always answer with, “absolutely nothing!”  Though having a severe congenital heart defect is not ideal, it doesn’t define who I am. Only the Lord can do that! The number one advice I always try to tell parents of CHD babies is to allow your child to live the life they were meant to live.

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