[HCM in infants]

Author: trilby (---.ipt.aol.com)

Date: 10-20-02 12:30

Hi. I posted here a few months ago, I think, but that was right after Luke died, so my brain is a little fuzzy about it... I'd like to just say again I am looking for others in a similar situation: my son Luke died of HCM at one week, sudden cardiac arrest. From what I have read, HCM is much more severe when seen in infants. I would love to hear from others with INFANTS with HCM, or people who decided for/against having more children after having a child with HCM. We are awaiting autopsy results, but so far it looks like they cann't find anything genetic, and no family history. My dh and I are both 32 and do not have it, my five year old son shows no signs (we all had an echo) and there is NO family history of any heart problems, unexplained deaths...nothing. Looking forward to hearing from others.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants]

Author: Sharon (---.ph.ph.cox.net)

Date: 10-21-02 00:17

Hi,

My sincere condolenses for the loss of your little Luke. No matter how young or old, the loss of a child is very difficult. Two years ago my son, Anthony, died from undiagnosed HCM at age 20. He was my only child, my only son. Most of my family have had echocardiograms and we can't find any genetic link in our family tree, backwards, forwards or sideways. We have not officially traced the family tree back over many generations as Lisa suggest. It's quite a time consuming task. Someday I hope to do that. So we are left with the docs calling Anthony's death a case of "spontanious genetic mutation."

Having more children is not much of an option for me. I am 40, single, and without a partner. Besides, having children is a very personal decision for anyone. Whether you have HCM or any other chronic disease.

Lisa Salberg has said this many times to HCM members trying to decide to have or not to have children. "HCM is like the color of your children's eyes. You have a 50/50 chance of your child having your eye color or the eye color of your partner."

Grieve for your son, Luke. Mourn his loss and the loss of his precious life. There is a definite process that each person goes through, a very individual process. Your whole family will experience this loss differently. The loss of a child, infant, or young adult is a very tramatic and heart wrenching experience, I know, I live it everyday. But, we don't stop living. It seems like it at first. But, the sun still sets at night and comes up again each morning. And people keep having babies. We will continue.

Again, having children is a very personal decision. Only you can decide.

Best Regards,

Sharon

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants]

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

Date: 10-21-02 08:54

Hello again,

Did you ever get word back regarding all other testing done on Luke? I was unsure if they had run all the medibolic tests to rule out other disorders. I also have a doc. who may be willing to look at the records and give an opinion if you would like. email me privately if you want more information.

Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: HCM in infants]

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

Date: 10-21-02 21:54

Hi,

Again, I'm sorry for your loss. I would like to echo Lisa's post. Left ventricular hypertrophy can be caused by other things. HCM is not the only thing that causes it. And HCM is genetic and it really almost always needs several years to "grow" so I think that any investigating you can do to determine what the story is would help you make decisions about further testing for you and your family and for more kids, etc, etc.

While it is possible to have HCM really young, and it is possible to have HCM be a genetic fluke and turn up to the be only one in the family, the odds of either are really , really low --so having both together is exponetially rarer and a red flag to look really hard at this. Not that you couldn't be one in a million million, but odds are odds.

peace and good wishes,

Sarah