Heart Disease Community
20.2k Members
Avatar universal

ICDs in young children with HCM

I have a 7 year old daughter with HCM, with a very thick septum (4.0 on MRI) and no symptoms--due to her septum size, she's recommended for an ICD--but we find that's very rare in young children and that she would need it through her abdomen. It is her only risk factor at this time-although a big one....

Any thoughts from others? Experiences? Docs/places that do the most of these WITH HCM folks?

3 Responses
Avatar universal
Sorry to hear about your daughter, Have you talked to Lisa at the HCMA ?  She will know all the HCM specialist and centers in the country. I have never spoke to anyone who knew more about HCM than her, She is well worth talking to.

My ICD is in my abdomen, One of the few but it has worked for seventeen years. But I was in my twenties when implanted. Good luck Hope you get a chance to talk to the HCMA you will find many other parents of HCM children.
Avatar universal
Thanks for the response--yes, I've talked to Lisa and posted on HCMA and I'm not finding kids with ICDs in their abdomen--0---Can you tell me about yours? Why was it placed abdominally? Have you had any issues with it?

I actually talked with Dr. B Maron today--he had seen Halina last month and recommended the ICD--so he's checking with others to see what the best route would be. She is within about 10 pounds of being able to probably have it transvenously---assuming no probs.

Were they able to "test" yours without probs? The EPs tell me that with my daughter's septum size testing it could be a problem and she might need additional leads....
Avatar universal
I am pretty sure that in the early 90`s all ICD`s were implanted in the abdomen.  The battery was the size of a deck of cards.
I had never had any issues with any of my ICD`s until a year or so ago.  Between the thickness of my left ventricle and apex and the old heavy wire from my old leads, Pacing does not work anymore.
I never had a problem testing the unit that I know of, I have a machine at home and test every week.  I have even been tested on the EP table back in the beginning , It made me a believer that it works.

As a parent my thoughts and prayers go out to you. Please let me know how everything turns out.
Have an Answer?
Top Heart Disease Answerers
159619 tn?1538180937
Salt Lake City, UT
11548417 tn?1506080564
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Is a low-fat diet really that heart healthy after all? James D. Nicolantonio, PharmD, urges us to reconsider decades-long dietary guidelines.
Can depression and anxiety cause heart disease? Get the facts in this Missouri Medicine report.
Fish oil, folic acid, vitamin C. Find out if these supplements are heart-healthy or overhyped.
Learn what happens before, during and after a heart attack occurs.
What are the pros and cons of taking fish oil for heart health? Find out in this article from Missouri Medicine.
How to lower your heart attack risk.