Re: Newly diagnosed 6 w old baby
Jenn - First things first, congratulations on the birth of your new daughter. HCM in newborns is something I have no knowledge of. In reality, getting good information AND quality care for any HCM patient not easy. If you look around here, many of us took years for a correct diagnosis. I've never heard anything a mother causing it due to something like sugar levels. HCM is genetic, plain & simple. Nothing you did or didn't do caused HCM in your wee one.
Now onto her care. I'm a bit concerned that anyone may have said this and therfore question either you misheard this, or they are speaking of something else or they have no real knowledge of HCM. Frankly, after getting any kind of scary news, its amazing you could hear or think! I'd try to get a call to Lisa at the HCMA offices in New Jersey. She can ally any mis-information you have, get you on track for a good doctor and put you at ease.
Phone: 973-983-7429, Fax: 973-983-7870, Email: firstname.lastname@example.org
Glad you found us and we are all wishing you & yours all the best as you travel this road. We're here for you!
Diagnosed @ 48
Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
Father to 3 boys 18, 22, 26 (all currently clear - pending genetics)
AICD - Valentines Day '08
After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
Quietly going insane . . .