Keisha joins us to share her journey of living with congenital heart disease, from undergoing her first open-heart surgery at just 10 months old to life as an adult with a mechanical heart valve and pacemaker. Here, she tells us her inspiring story:
*Please note: This story includes discussions of open-heart surgery and pregnancy loss. Keisha’s experience is unique, and every person living with CHD is different. For advice about pregnancy, CHD or starting a new exercise regime for yourself or your child, please speak to your doctor, specialist cardiac nurse or medical team.
Hi, I’m Keisha Carlton. I’m 33 years old and I was born with congenital heart disease (CHD).
When I was just 10 months old, I underwent my first open heart surgery at Alder Hey Children’s Hospital. I was born with long segment subaortic stenosis, subpulmonary stenosis and an abnormal mitral valve.
From such a young age, hospitals became a huge part of my life. I spent days, weeks and sometimes months in hospital, and appointments became my normal.
My childhood was very different to most, but it also taught me resilience from an age when I didn’t fully understand what I was facing.
Following my first surgery, I developed complete heart block and needed a pacemaker. Since then, I’ve had multiple pacemaker replacements throughout my life.
I also developed bacterial endocarditis twice, which resulted in lengthy hospital stays and more treatment.
Those experiences reminded me how fragile life can be, but they also showed me just how strong the human spirit is.
In 2002, when I was nine years old, I underwent another open-heart surgery to replace my mitral valve with a mechanical valve. That operation completely changed my life. Although it meant taking lifelong anticoagulants and continuing regular hospital appointments, it dramatically improved my health and gave me the opportunity to live a fuller life.
Throughout my journey, I’ve been cared for by incredible teams at Alder Hey Children’s Hospital, Liverpool Heart and Chest Hospital, and Manchester Royal Infirmary. I genuinely wouldn’t be here today without the surgeons, doctors, nurses and everyone who has cared for me over the last 33 years.
I know how fortunate I was that my heart condition was recognised early. Early diagnosis meant I received life saving treatment before irreversible damage could occur. It gave my family answers, allowed specialists to monitor me from the very beginning and gave me the best possible chance of living the life I have today.
I often think that if my condition hadn’t been detected so early, my story could have been very different. That is why the work Tiny Tickers does is so incredibly important. Every baby deserves the same chance that I was given.
As I’ve grown older, I’ve realised congenital heart disease doesn’t just affect childhood. It stays with you through every stage of life.
One of the most difficult chapters of my journey was experiencing a pregnancy that became incredibly complicated because of my heart condition. Living with a mechanical heart valve and lifelong anticoagulation meant the risks were extremely high for me.
It was one of the hardest experiences I’ve ever faced and one that ended with heartbreak. It reminded me that congenital heart disease doesn’t disappear when you become an adult. It continues to affect your health, your relationships, your future and the life you dream of having.
Today I live with a mechanical heart valve, a pacemaker and scars that tell my story. For a long time, I looked at my scars and only saw everything my body had been through. Now I see them as proof of everything I’ve survived.
Fitness completely changed my relationship with my body. It taught me to stop focusing on what my body looked like and start appreciating what it was capable of.
Today I work in healthcare, I travel the world, train regularly and continue challenging myself in ways I never imagined would be possible as a little girl lying in a hospital bed.
Sharing my story is one of the most vulnerable things I’ve ever done. For years I kept so much of it to myself because I didn’t want people to see me differently. Now I realise that by being honest about both the difficult moments and the victories, I can help others feel less alone.
That is why I wanted to work with Tiny Tickers and why I’m so passionate about raising awareness of congenital heart disease.
I want expectant parents to understand the importance of early detection. I want families receiving a diagnosis to know there is hope. Most of all, I want children born with congenital heart disease to grow up believing that their diagnosis doesn’t define them or limit what they can achieve.
If sharing my story gives even one family hope, helps someone feel understood or encourages more awareness around congenital heart disease, then every vulnerable conversation is worth having.
My heart has been through more than most, but it has also carried me through a life filled with love, purpose and opportunities I once thought were impossible.
I hope my story reminds others that although congenital heart disease is part of our lives, it does not have to define our future.
Watch Keisha share her story in the video below:
*Please note: This story includes discussions of open-heart surgery and pregnancy loss. Keisha’s story is her own unique experience, and every person living with CHD is different. If you have questions or concerns about pregnancy and CHD, we advise speaking to your doctor, specialist cardiac nurse or medical team for advice specific to your circumstances.
Please consult your doctor, specialist cardiac nurse or medical team before starting any new exercise regime for yourself or your child. Every condition and patient is unique; therefore, you should obtain medical advice for your or your child’s specific circumstances.
A huge thank you to Keisha for sharing her story with us and helping to raise awareness of congenital heart disease. We’re incredibly grateful for her honesty and for allowing us to share her journey with our community.
Find Keisha on Instagram to discover more about her life, accomplishments and day-to-day experiences of living with CHD: @keishacarlton
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