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.
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....
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.