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  • infant HCM...desperate for info

    [infant HCM...desperate for info]

    Author: shelva (---.proxy.aol.com)

    Date: 08-31-02 18:07

    Hi. My sond died on 8/16/02 from cardiac arrest caused by HCM. We had been sent home from the hospital at 4 days and told that it could be HCM or something else. We were told to come back in a month. Well, 3 days later he started to get pale and cry unconsolably, and I hit the panic button. I had him in an ambulance within 10-15 minutes, but he was in arrhythmia so badly by then that we had to take him to the closest hospital (a small community one) and the helicopter wouldn't fly from the hospital he had been treated at due to weather. We sat helpless for 4 hours while he turned blue and cold, despite the best attempt of the dr, nurses, and paramedics. I am looking for information now on this subject and have the same questions as many of you. Is it always genetic? Can we be tested genetically or are we just taking our chances if we decide to have another baby? How can this just show up in our baby when there is NO family history of any any any heart problems?? Not only did we loose our precious precious, perfect beautiful Luke, but now we have to worry about everyone in our family and subsequent pregnancies???? It has shattered my world, to put it mildly. Any help would be so greatly appreciated. Thank you.

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    [Re: infant HCM...desperate for info]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 08-31-02 19:43

    Dear Shelva,

    I am so sorry for your loss. I hope that you can find a little comfort reading some on this message board. There are several people who have posted here who have lost infants recently. As far as I know, HCM is almost always (99.9%) genetically transmitted. I could be wrong. If I am, I know someone else who knows more than I do will post after me and correct my statement. Please read all posts, in case that happens.

    First, please take some time to grieve for yourself. Second, either you or his father probably carries the gene mutation that caused the HCM. You may have the mutated gene for it without showing the condition, although it is rare. Third, you should both be screened for HCM. This involves an echocardiogram, and probably an EKG. The only real way to know if you have HCM is echo. That's when they do an ultrasound of the heart and do lots of measurements. If that's what Luke had, and one of you should test postive for HCM also, your parents, siblings, their children should be tested. It is a dominant trait.

    As far as whether or not you should have more children and whether or not they would have it, nobody can say. There is a 50/50 chance they will be passed the gene for HCM, but many many many people with HCM live past the national average, 73 years old.

    There is a lot of information out there, so please educate yourself on this as well as you can. That way you will be prepared with what questions you would like to ask when you go to the doctor.

    Again, I am very sorry for your loss. Please let us know how you are doing. You've found a place of great support here at the HCMA.

    Reenie

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    [Re: infant HCM...desperate for info]

    Author: Board Moderator: Sarah Beckley (---.28.33.97.Dial1.Chicago1.Level3.net)

    Date: 09-01-02 01:49

    My dearest Shelva,

    I am so very, truly sorry for your loss. You and your family are in my (and my mom's) thoughts and prayers.

    I have to say that HCM as a diagnosis at 4 days is pretty suspect. Infant HCM is very rare. Hypertrophy and enlarged hearts can sometimes be caused by metabolic problems. I hate to ask, but did they do an autopsy? It would help explain what really happened to your angel.

    Regarding HCM: It is genetic. But there are forms of hypertrophy that may be caused by other things --which is why I mention the autopsy and metabolic disorders. Regardless of the autopsy, you and the rest of your family should get echocardiograms to rule out any hypetrophies. If none of you have any hypertrophy, then it is probably not HCM.

    In addition, let me explain a little bit more about HCM genetics. First of all, there are several ways that HCM makes its appearance. Rarely, there is a genetic mutation and someone in the family becomes the first patient. Only the offspring of that patient will be at risk for inhereiting HCM. However, since it is a dominent gene, the odds are 50/50 for each child of the carrier. Third, even more rarely, the gene appears to skip a generationl. This means that the person carrying the gene doesn't actually develop any hypertrophy, but they pass the gene along to their child, who then can develop full-blown HCM.

    So, with all that in mind, I think that screening would be a wise precaution but please don't assume that HCM is in your family just yet. As I said above, infant HCM is extremely rare and it is probably more likely something else. But Reenie is right, if it does turn out to be HCM, there are treatment options and there are implantable defibrillators that can reverse sudden arrhythmias instantly.

    I hope that this information helps. Please let us know what the eventual diagnosis is discovered to be and let us help you find specialists for screening if you need them.

    best wishes,

    Sarah

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    [Re: infant HCM...desperate for info]

    Author: Krista Donnelly (---.lnh.md.webcache.rcn.net)

    Date: 09-01-02 17:01

    I lost my infant son Seamus on June 27 when he was 6 weeks old. I'm assuming it was cardiac arrest, but I don't know for certain yet. I just woke up to find him not breathing, and then started CPR while the ambulance came. They were able to stabilize him eventually at the hospital, but he was virtually brain-dead by then. The hospital did an echocardiogram on him when he was in the intensive care unit and discovered his thickened septum (7-9 mm). They're doing testing right now for metabolic disorders to see if the hypertrophy was caused by that rather than by straight HCM. Prior to that morning, he had seemed perfectly healthy.

    I don't really have any answers because I'm in the same boat as you (except there may be a family history in my situation - I had a paternal uncle who died at age 7 months from an enlarged heart.) I just wanted you to know that you're not alone and if I get any answers about Seamus, I'm willing to share them with you.

    Krista Donnelly

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    [Re: infant HCM...desperate for info]

    Author: Patricia wonderly (---.158.81.13.Dial1.Buffalo1.Level3.net)

    Date: 09-01-02 20:48

    Dear Shelva;

    I can't even imagine how sad and confused you must feel. I am very sorry for your recent loss.

    I can answer one question for you. I am 39 and 3 years ago I was the 1st in my family to be diagnosed with HCM. Someone must have been a carrier, but been asymptomatic. It can appear to just "pop up" in a family with no previous history. Now, my 3 young children get echos on a yearly basis to check for HCM.

    You are in the right place. Please give Lisa Salberg a call. She is a very informed, compassionate person, who will point you in the right direction.

    Best Wishes,

    Tricia

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    [Re: infant HCM...desperate for info]

    Author: Michelle Flanagan (---.as1.appl.wi.voyager.net)

    Date: 09-02-02 10:34

    Shelva,

    I am so very sorry for your loss. I have 2 children with HCM. My daughter was diagnosed at 7 days old and my son at birth because of his sister's history. They are now 11 and 8, respectively. We did not have any family history of this disease either. My daughter's diagnosis was the first. We've all been screened with no further diagnosis's in the family. We did stop at the second child, though, because of the 50/50 chance the next child would also have HCM and more severely.

    I hope you can find the answers you need to grieve. God be with you.

    Michelle - Mom to Krista (11) and Tyler (8) both HCM

    Krista surgeries: 1997 septal myectomy, 1999 mitral valve replacement

    Tyler surgery: 1998 septal myectomy

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    [Re: infant HCM...desperate for info]

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

    Date: 09-02-02 12:55

    Shelva,

    I can not find words enough to express my sympathy for your loss. I can pnly imagine your confusion and frustration at this time. It is highly unusual for a child to have HCM and die so young, although as you can see from the message board it does happen.

    It is highly likely that your child had a secondary condition such as a medibolic disorder that may have presented "looking like" HCM. However it may have simply been HCM.

    You and your husband/babys father should be screened by echocardiogram to see if either of you show any signs of HCM. You should also look into your family tree for any heart realated problems , early deaths, drownings, car accidents anyone who died in an unusual way. These may have been HCM related yet undetected. If anyone in the family has HCM then it is likely that your child did have HCM and that future children will have a 50/50 chance of having the gene as well. There is no way to know if the gene will react in the same way in the next child, or if the gene will express at all.

    I know you are in a great deal of pain and this is all overwhelming. Take your time to learn and to grieve and know that you are amoung friends here and we will be here as your learning process grows.

    God Bless your little angel,

    Lisa Salberg
    NOTE: This is a post from the previous forum message board.
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