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  • autopsy of my son, 7days, with HCM

    [autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 15:15

    Lisa: I have spoken to you before about my son, Luke, who died in August. Initially he was diagnosed with left ventricular hypertropy after birth, we were kept in the hosp. 4 days and sent home with an appt in one month... He went into cardiac arrest 3 days later at home and died in the ER within hours. I received a copy of this letter today. Luke was sent to another county for autopsy b/c they could not perform it locally. I am writing to ask what you make of this. I have been doing fairly well, considering, but the stress of not knowing what happened to Luke is really getting to me. Any comments you have would be appreciated. I am also posting on the message board in case someone else may have a thought. Thanks

    Trilby Henderson

    On August 17, 2002 I performed an autopsy on a 7 day old maile by the name of Luke Henderson as you requested. During the gross examination it was obvious that he had a greatly enlarged heart with an unusual color of the myocardium.

    The microscopic examination of the heart was also extremely unusual for a simple congenital hypertrophic cardiomyopathy and special staining of the microscopic slides did not fully illuminate the abnormality. I understand the parents are extremely concerned about the true cause of death as Luke was their first child and they are interested in possible genetic difficulties. Therefore, I consulted Dr. xxx Coroner and pediatric pathology specialist.

    I spoke with Dr. xxxx on Friday and he agrees that this case is extremely unusual and has decreased his differential diagnosis to two entities. He now wishes to perform specialized testing on the myocardium at his laboratory as it is impossible for us to perform . The goal of this testing is to specifically define the disease to aid the family's counseling regarding possible future genetic consequences.

    Dr xxx feels that this testing may take a few more weeks and I cannot complete my report without review of his results. Because this testing is directly involved with my determination if the cause of death, we will absorb all costs and of course will inform you of all results as soon as possible.

    I apologize for the length of time this case has taken, but it appears to involve a relatively rare disease. If you have any questions or I can be of further help, please do not hesitate to call.

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 16:40

    Dear Trilby,

    I think that it is very good of them to pay for the extended testing to determine the exact nature of the disorder so you will hopefully be able to find out what it is exactly.

    The best case scenario for future children would be if this were some sort of anomaly and not a genetic disorder so you can have more kids (if you want) without that worry.

    However, if it is a genetic problem, then you have the ability to make informed choices about your options going forward and they have genetic couselors to help you with that. Please read the article on DNA in the December Wired magazine for some amazing science about DNA.

    I'm sorry for your loss,

    Sarah

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 17:57

    I know you would have wished for a simple answer, but it seems that that is not going to be the case at the moment. I think you have someone here who is doing his best to find the right answer, not an easy one. There are a number of possible causes of death other than straight HCM. The testing he is going to do will shed some light for you and I think is the best thing to do.

    Hold tight a few more weeks and you should have a very firm answer to what happened to your sweet baby.

    We are here if you need us.

    Best wishes,

    Lisa

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

    [Re: autopsy of my son, 7days, with HCM]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 11-14-02 18:03

    Dear Trilby,

    How difficult this must be for you! And the waiting makes it worse, I'm sure. I agree with Sarah that it is good of the pathologist to pick up the cost of the extra testing. I also think it is especially good of this physician to go the extra step and seek another opinion and additional testing. It would be much "easier" to simply call it HCM. But because of this high level of professionalism, you will end up with the best-possible answers to all the questions you are asking.

    Since this started in August, it seems they might have the results of the additional testing by now. Is there anyone you can ask?

    In the meanwhile, take care of yourself. And remember you're not alone.

    Pat

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 18:14

    Pat, I just got this letter today; so it will be several MORE weeks before we will receive the results. This letter came in response to my calls, last month, at which time they told me to call back this month. I called 3 days ago and was told to call back in a week, then today this letter was faxed to me. I can't handle this waiting!!!! I will be on the computer nonstop trying to figure out myself what the "two entities" are that he has narrowed it down to! Thanks for being there guys!Trilby Henderson

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 18:17

    I think the 2 may be related to medibolic disorders rather than HCM...but I think it may very well turn out to be HCM. It is a long process and I know it is hard to wait..hang in there as best you can.

    Big hug!

    Lisa

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 19:04

    Dear Trilby,

    Try and let go. They do need time to figure this stuff out and it won't help you any to go crazy over trying to guess what they will find. Work on letting go of the result and work on being glad someone is trying to find an answer for you. Easier said than done, I know, but your family still needs you here, so take care of yourself and try to put it aside for a while.

    take care,

    S

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 19:13

    S: I can't. I can't. I can't. I can't. But thanks for trying.

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 20:16

    T

    Have you asked them to tell you what those two other thingies are? I don't see why they can't just tell you.

    S

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-14-02 20:20

    I dont think they will; the path. that did the autopsy is in another county, and when I called there they wouldn't tell me anything, I had to talk to our coroner. Our coroner is less than helpful, to say the least, and he only knows what is in the letter, besides. I wrote to Luke's cardiologist with this new info, I am hoping he can get the ball rolling and maybe give me some idea. I have been searching and searching, there is nothing I can find that he fits the category of; most of the metabolic disorders have other deformities, or muscle weakness as a symptom, or they don't come on suddenly. He was a gorgeous totally healthy child (to look at him on the outside at least) up to the exact minute he went into cardiac arrest. Thanks for chatting with me, I know Im a pain.

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

    [Re: autopsy of my son, 7days, with HCM]

    Author: maura mendoza (---.proxy.aol.com)

    Date: 11-15-02 02:48

    Trilby,

    My thoughts are with you , you are included in my prayers. I am waiting the Autopsy report for my son Travis, even tho they said on the phone the day after he died it was HCM, I will wonder untill I get the report.I completely understand you not being able to direct your energy elswhere, I too am searching constantly for answers. Its OK.......Do what you need to do to get you through, I am thinking of you, If you ever need to talk please dont ever hesitate to connect with me ! Maura

    Mother to Travis Mendoza 7-9-88 8-22-02

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-15-02 03:49

    Dear Trilby,

    You are _in_ pain, not _a_ pain. This is why we are here, so never apologize for how you feel.

    take care,

    S

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-15-02 04:08

    I know it sounds a bit harsh...but CANT is a 4 letter word here...

    YOU CAN! It is hard, sad, upsetting and 1000 other bad things...but you can do it, you can do it for Luke and all the other babies that may be helped by the information gathered.

    Stay strong and vent here as often as you like.

    bigger hug,

    Lisa

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

    [Re: autopsy of my son, 7days, with HCM]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 11-15-02 09:00

    Dear Trilby,

    I do believe that all of us are capable of coping with the most difficult of events and that we probably shouldn't tell ourselves otherwise by saying we "can't" cope, relax, whatever.

    I also know that the death of one's child comes closer to overwhelming our ability to cope than most of us can begin to comprehend. As I read and re-ready your post, I think about you, the fact that you had no warning or time to prepare yourself, and now you are on hold in finding an explanation which will help you move toward some sense of resolution. I imagine the thoughts and questions which must run and re-run through your mind. I think it must be like having a big wound and continually rubbing it and making it worse, rather than being able to let it heal. You try not to rub, but if you don't something or someone else does rub it, so you feel the pain and injury again and again.

    Have you found Compassionate Friends yet? http://www.compassionatefriends.org They are on line and many communities have chapters with frequent meetings. The members are other parents and grandparents who have experienced the death of their children from all sorts of problems, not just heart-related. I've had many parents tell me they got a lot help from becoming involved with Compassionate Friends.

    I'm glad you asked the help of Luke's cardiologist. He may well be able to get through the bureaucratic inertia faster than you can.

    Pat

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

    [Re: autopsy of my son, 7days, with HCM]

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

    Date: 11-16-02 10:05

    Thank you all for the support. I CAN go on with my daily life, and I have- better than most people would I think, but I cant stop thinking about the autopsy until we have an answer. That doesn't mean I am incapable of functioning...my house is clean, my laundry is done, and my husband and son are fed I just have this nagging, flighty, nervous, butterfly feeling that I can't get rid of, and everytime i finish something, I end up on the computer, looking for diseases, syndromes, disorders that have the (few) symptoms that Luke had. When Luke was released from the hosp at 4 days old, the cardiologist told me SPECIFICALLY not to go home and start researching stuff on the computer because I would totally freak myself out and they "thought" it was going to turn out to be nothing. SO: I am now doing the opposite: trying to find out all I can so when the path calls or the cardio calls I can be ready and informed to ask the right questions. Trilby, near wheeling WV
    NOTE: This is a post from the previous forum message board.
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