Tyler Thayer   |   October 31, 2016

One of the Oldest HLHS Survivors — Stephanie’s Story


My name is Stephanie Romer and I am 30 years old. I was born and raised in Dayton, Ohio and born with a fun variety of congenital heart defects, summed up as Complex Congenital Heart Disease. I was born with Hypoplastic Left Heart Syndrome, Transposition of the Great Arteries, ASD, VSD and MVS. I now have Bradycardia and cardiac induced cirrhosis of the liver.received_10100638953281460

On November 16, 1985, my mother gave birth to what they would have assumed would be a healthy baby. However, life for my father and mother went from a Midwestern dream to extremely traumatizing within 30 seconds. After being told their perfect healthy pregnancy had turned into their daughter being born with a terminal heart condition, their lives got flipped upside down. The doctors had never seen anything like this before and had no idea what to do with me.

I then had three heart surgeries all before the age of four. The initial plan was to keep me alive long enough to receive a heart transplant. At 2.5 years old I was very blue and progressively getting worse. At a routine heart doctor’s appointment, they told my parents I was now in heart failure and they need to act fast. That’s when the doctors began researching other options, and started talking about a new surgery called The Fontan in place of a heart transplant.

My parents spent the next year taking multiple classes and meetings with doctors to teach them about my anatomy and how this procedure would help me. The doctors and surgeons also informed my parents that although there were some surviving Fontan patients with different heart defects, there were no known people with my combination of heart defects and it was unlikely I would survive to adulthood whether I got the Fontan or the Heart Transplant.

On June 26, 1989 I was one of the first babies to undergo the new Fenestrated Fontan procedure that had been done “a few times before” received_10100638953251520as my surgeon, Dr. Warren Bailey, said. My mother took a year off of work and my father drove back and forth over an hour every single day to go to work and visit me in the hospital. I am now 30 years old and have not had a heart surgery since my Fontan in 1988. I manage my heart and cardiac induced cirrhosis of the liver by monitoring what I put into my body, exercising, and keeping a strong spirit and mind by never neglecting my mental or physical health.

As a child, I played softball and was the best 3rd base player and undefeated pitcher. I worked out almost every day from age ten to fifteen. I was so focused on building my body strength so I could do what I wanted to do while I had a strong body. If I wasn’t doing homework, I was playing football, basketball, skateboarding and rollerblading with my brothers and all the neighborhood boys. If I wasn’t doing that, I was participating in my brothers weightlifting competitions, running on the treadmill, and doing sit ups, push-ups and all kinds of workouts alone in my room at my own pace.

The word determined doesn’t even explain it. I was on a mission to make my body indestructible. I refused to have this “heart problem” dsc00887and as an adolescent I truly thought I could build my body so strong I wouldn’t have a bad heart anymore. I didn’t understand CHD until mid to late twenties. There was no internet and I had no way of getting to a library. I purely acted on instinct and listened to my intuition. I did struggle with body image issues pretty much my whole life. I was forced to learn and live two lives and it was beyond overwhelming. I just wanted it to end. How I dealt with it was working out and playing sports. I never cared as a teenager if I died trying to be normal – I just wanted to be normal so pushing myself was an understatement. Yet, in retrospect has now saved my life many times over because of strong I made my body. Little did I know, I could not “fix” myself of make my CHD better, this is a lifelong disease with no cure.

How I look at my diagnosis now is really hard to explain because it’s just the only life I know. I obviously never wanted this, I spent fifteen received_10100638953296430years on a mission to “get rid of it” and learned the harsh truth that I couldn’t. This took a huge toll on my mental health on and off throughout my whole life. I don’t know what it’s like to have the energy of a person with all four chambers of their heart and a steady stream of blood flowing from your feet to your brain and back again continuously without any struggle, sudden pains, shortness of breath, or surprise dizziness. I could never comprehend a life without being a living human experiment.

I am now one of the oldest living people with HLHS in the world and all I want to do is empower people. I believe God made me such a clear, articulate speaker and communicator from an abnormally young age to prepare me to articulate the needs for those who are unable to explain it.

After speaking at an event a few years ago, I was told by a family that they “truly believe you were born to be on the front lines of this battle” and it’s comments like that that keep me empowered to keep fighting. The fire inside of my veins is no longer an independent, adolescent motivation to somehow “cure” my own disease. It is fueled by you – the people who fightdsc00897 next to me, for me and with me in the trenches of a world that wasn’t built for the disabled to survive.

I will never stop investigating and unpeeling the giant CHD onion, and revealing our truths from the mouths of survivors. In turn this will slowly build a map for our doctors and loved ones, who will then teach the next generation more effective and safe ways of living their lives. As a result, together as a community of survivors, doctors, other professionals, and loved ones, we will create multiple medical advancements, resources and tools to continue unpeeling the mysteries of Congenital Heart Disease.As a result, we will finally create a world that is made for the disabled to not only survive but thrive for the first time in history.

And this is just the beginning.

Join us on our mission to fund CHD research and give individuals like Stephanie a chance at a continued healthy future. As one of the oldest living adults with HLHS Stephanie is paving the way for the next generation of children to receive the continued medical care they need as they grow. Join us here: https://projectheart.org

  1. Beth Williams   |   November 16, 2016

    Excellent story Stephanie! You are truly an inspiration to so many. Keep on keeping on my darling daughter:-) Love you, Mom

  2. Amanda Rueter   |   November 16, 2016

    Thank you for being a voice for all with CHD! You have almost the exact same combination of defects as my 2 year old son. We pray everyday for advancements that will keep him living and loving life for many years to come!

  3. Aoife O'Driscoll   |   November 18, 2016

    Thank you for Sharing your story it’s inspirational and full of hope. My daughter is nearly 6 years old with complex CHD inclu HLHS. She’s a determined lil lady too. Aoife , Dublin, Ireland x

  4. Leslie Beech   |   November 18, 2016

    Stephanie, I am so glad to see you share your life story. You are an inspiration to your family and now others have the privilege to meet you and experience the lift of your spirit. Never stop being you! Much love, Aunt Leslie

  5. Aimee cantadore   |   November 21, 2016

    Amazing story! Such an encouragement! My daughter has HRHS, Tras. Of the great arteries, VSD, ASD, and aorctation of the aorta. She has had two of three surgeries and is 9 months. And doing awesome! I played softball as well growing up and my husband played basketball. Sports run in our family and to read of all you have done gives me hope that she will be able to do anything she wants to do! I pray she will see her life as a motivation to empower others as you have!

  6. Brenda   |   November 22, 2016

    You are such a blessing. Keep up the great work!! My granddaughter is eight now and has had 4 surgeries including the Fontan. She will go again in the spring to have the Fenestration from the Fontan closed as it has not. I have liked your page to give her inspiration. And thank you for your inspiration.
    Her FB page is Brooklynns Pray Warriors; https://www.facebook.com/BrooklynnsPrayerWarriors/?fref=ts

    • Jonathan   |   July 2, 2019

      Hi Stephanie, thanks for sharing your story! I find it amazing and very motivating. I was born with HLHS 20 years ago and have recently been diagnosed with severe liver cirrhosis. You mention that you also have liver cirrhosis but manage it well. Could you tell me more how you dealt/deal with the problems the liver presented? That would be most appreciated.
      Thanks again for writing your story here.
      God bless.

  7. Anki   |   November 22, 2016

    Thanks for shearing you experience with us. As a parent it is hard to know how my son feels and think about his hart condition. Probably a lot like you did. He just wants to be “normal”. Nice and comforting to hear you have a good quality life still. It gives hope for the future.

  8. Jamie Rhoads   |   November 25, 2016

    Thank you for sharing your story and giving so much hope to all of us parents with little chd Warriors. I am the mom of two young girls who are each single ventricle. Rock on with your bad self, bc after reading your story, i see that you are one kick-ass lady. Live and prayers for you to continue to live life on your terms! ❤️

  9. devon adams   |   February 15, 2017

    Awesome and unbelievable! Back when my son was born 18 years ago there was no internet or blogs for me to learn more from. You and kids like my son have forged ahead and give inspiration to others that come behind you. Never forget to turn around and help those behind you and thank you for what you do every single day.

  10. Maggie   |   May 8, 2017

    Way to go , Stephanie. You’re a real trouper like my brother is. He had his Fontan in the early 80s–I think 1982. He is 51 now. He just had surgery to reverse the fontan since it was failing. He came out of surgery fine and dandy. Right how he’s facing complications with fluid build-up so he’s still in Toronto at the hospital. This goes to show that you can live a long life. I have faith my brother will pull through and the doctors will find a way to stop this post-surgery excessive fluid build-up.

    • Chris   |   September 26, 2019

      Hey thats amazing, can i ask you which kind of problem your brother had. Hlhs?

  11. Caitlin. May Cardella   |   January 20, 2018

    Amazing! You truly are a survivor. You give me so much hope for my daughter Kaylee. Thank you!

  12. Eric burress   |   February 7, 2019

    Thank you for your post.my son began his fontan journey in 91 .he is 28 today and is doing better than we ever imagined. He now has rythm problems but we are dealing with that as it comes .you are an inspiration to all god bless …

  13. Kyram (keerum)   |   February 11, 2019

    Stephanie I am a heart mom since April 2018 and I came across your page and I literally dropped tears for what you have gone through, I understand I will never know what it’s like to be the one with chd but I have vastly suffered witnessing my baby daughter’s surgeries, I’ve been lucky big of course never lead a normal life. I wanted to share with you that I have studied this extensively and I will attempt to defeat it genetically using CRISPR technology. Besides this there’s good people from BIOLIFE4D who are making healthy hearts in labs from the patient’s own stem cells using a process named differentiation turning those stem cells into cardiomyocytes and using those in a living ink and 3D printing a heart, they need more funding, of course as soon as I’m in a position to do so I will. I Myself am a former child survivor of Aplastic Anemia and inexplicably against all doctors’ predictions , one day began getting better until I was no longer Ill. I know you don’t know me and I don’t know you but if you read this I would like to send you a big, big hug. Kyram sounds like kirum

  14. Clare phillips   |   March 7, 2019

    I came across your story accidentally and I’m so pleased I did.your story gives so much hope.you are a true inspiration.My daughter has CHD and had a fenestrated Fontan in 1996 in the USA although we live in the UK.She is 25 now and has had a successful birth of a little girl last year and is doing really well.

  15. Theodora   |   April 15, 2019

    Stephanie do you have problem with both valves?etc aortic and mitral?

  16. Amy Smith   |   July 26, 2019

    Dear Stephanie,
    My name is Amy Smith (maiden name, Amy Aldridge.) I was born in Chicago in 1970. I, too, was born with Transposition of the Great Vessels, Tricuspid Atresia as well as VSD. I, also, underwent three open-heart surgeries before the age of 7. My Fontan was done in 1977 (not a fenestrated one). My faith in Jesus Christ has helped me live a fulfilling life; I’ve traveled the world teaching English and eventually became a Spanish teacher. I just learned that I also I am suffering from cardiac induced cirrhosis of the liver. This summer I just went through an entire evaluation process for a heart and liver transplantation. I will probably be put on the transplantation list the second week of August and it will be done at Stanford University. If approved, mine will be the third transplantation performed at Stanford.

Leave a Comment Below

Your email address will not be published. Required fields are marked *