[Preparing for test results]

Author: Krista Donnelly (198.76.142.---)

Date: 08-22-02 16:55

It's almost time for us to get the results from the tests (checking for metabolic disorders) the hospital was performing on our 6 week old son Seamus who died at the end of June. I've been spending a lot of time reading past messages on this board to see what other's experiences were and trying to figure out what we should do for the future.

My husband has had an echo which the tech said was normal, but he was just a tech at a GP office, so I'm not very comfortable just accepting that. We weren't given a copy of the results so I'm having my husband call and get them sent to us. Once we get Seamus' diagnosis in writing, I'm going to have an echo myself.

I've also been thinking about our family history and talking with relatives. I had a paternal uncle who died at age 7 months from what they said was an enlarged heart. My grandmother said they told her "it was as big as an adult's heart." That was in the 1930s before HCM was recognized so I think there's at least the possibility he had it.

Thanks to the other thread on membership, I just sent in a check to join and get the book. But I think once we get Seamus' medical records and the diagnosis in writing, I want to talk with a HCM specialist. I'm very worried about future children. If he did die from sudden cardiac arrest without any prior symptoms I want to find out what we can do for our next child. Would they do an echo right after birth to check the septal measurements? Would having the baby on a heart monitor help?

Lisa, is there a time I can call you to find out about who's in my area? I live in Beltsville MD which is in the metro D.C. area.

Thanks,

Krista Donnelly

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[Re: Preparing for test results]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 08-22-02 17:45

Dear Krista,

I'm so sorry for you loss. I don't know how old someone has to be before they can install an implantable cardioverter-defibrillator (ICD).

The best way to reach Lisa is to call the office and Ellen will schedule a phone appointment for you --973-983-7429.

I wish you all the best,

Sarah

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[Re: Preparing for test results]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 08-22-02 19:36

Krista,

If you want to check for HCM during your pregnancy you can have a fetal echo - I would not recommend this to all families but in your case, based on the early sudden onset it may be a useful tool for you in the future. If for nothing else for your peace of mind.

Call the office on Saturday between 10:30-2:00 I will be around.

Best to all!

Lisa

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[Re: Preparing for test results]

Author: Krista Donnelly (198.76.142.---)

Date: 08-23-02 14:47

Thanks. I'll be calling.