For patients like Sarah Anderson who are diagnosed with hypertrophic cardiomyopathy (HCM), having local access to advanced, specialized care from leading experts can improve their quality of life and greatly reduce the risk of heart failure or other heart conditions. HCM is an inherited condition that thickens the heart muscle and makes it harder for the heart to pump.
After years of heart trouble, Sarah was correctly diagnosed with HCM while pregnant with her second son, Noah. She receives expert care close to home at the Hypertrophic Cardiomyopathy Center at The Christ Hospital – the region’s first dedicated HCM center and the first in the region to be designated as an HCM Center of Excellence.
Hear more about her experience with the comprehensive team at The Christ Hospital, including Ankit Bhatia, MD, and Wojciech Mazur, MD, Co-Medical Directors of the HCM Center.
Sarah’s story in her own words:
I had been a totally normal, healthy 12-year-old and our first sign or symptom that anything was wrong is when I had a cardiac arrest. The only thing I really remember is my dad's voice just saying, “come on Sarah, come on honey, breathe.”
I had been at cheerleading camp the whole week, and they wanted us to work on flexibility. And so, I told my parents, “I'm going to go run around the block.” I remember being all the way on the far side of the yard, and that's the last thing I remember.
I somehow got all the way across the yard, up the hill that was the driveway through the garage, opened the door and fell dead at my mom's feet. And my dad was asleep on the couch, and he had been a paramedic for 18 years.
He came around the couch and he stopped because he saw me, and he knew what a dead person looked like. He did CPR and he got me back and then I died again, and then he got me back and then I died again.
And I woke up in the middle of the night. I saw all the burns on my chest from being defibrillated. And I was like, “oh, something's really not OK.”
They just diagnosed me with what they called primary electrical disease. They recommended that I have an ICD implanted so if my heart rate gets above a certain number, it will shock my heart. People liken it to having an emergency room in your chest. It's right there. It will revive us.
Accurate diagnosis of an inherited condition
When my second son was in utero, he had a fetal echocardiogram and his was not normal. So, they tested my blood and found the gene. I was 29, almost 30 maybe, and finally had an accurate diagnosis of hypertrophic cardiomyopathy.
My son Noah was very healthy until age eight when he had a cardiac arrest on a cruise ship in the middle of the ocean and my husband resuscitated him and he survived and has no brain damage, has no lasting effects.
He had his ICD implanted and then last February he was at baseball practice, and he thought he just got dizzy and sat down for a minute, but he had actually been shocked twice, one minute apart.
Noah has been shocked multiple times, and it has saved his life multiple times.
You would never know anything's wrong. The kids 6-1. I mean, he's massive for a 14-year-old and he looks exceedingly healthy. And that's the scary part about HCM is you can have zero clue that somebody is struggling.
Proven HCM expertise in Greater Cincinnati
Dr. Mazur and Dr. Bhatia working together to have Christ become an HCM Center of Excellence is huge. It's astounding, and it is a rigorous process that they have to go through.
Dr. Mazur and Dr. Bhatia, I think they worked for over a year and had multiple site visits and multiple hoops that they had to jump through to be designated as a Center of Excellence.
We're finally seeing movement with new drug therapies, new surgical techniques and Dr. Bhatia is on that train. He's ready. He's advocating for that. He's constantly thinking of the next newest thing that is coming to help advocate for these patients where we haven't had options of treatment.
Once you have been diagnosed with HCM and you're being followed by a physician, your chance of death is the same as the normal population. This is a tricky disease and so having doctors who really understand and know the different presentations of it is just of absolute importance.