If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

New baby

Collapse

About the Author

Collapse

shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New baby

    hi every one a update on my new Great Nephew, he is not doing well at all, he has an enlarged heart, he stopped breathing at least 4 times within an hour, and the dr. also thinks he has a brain bleed, they used suction to get the baby out of my neice, which i have never aproved of, something always happens in my eyes when they use that thing, it broke suction 3 times before they got the baby out, and the baby only weighed 5 pounds 2 ounces, now they think the baby has a brain bleed, my brother called me to ask about HCM i told him and Doctor told my brother babies are not born with HCM and I told my brother to get another doctor, i hung up from him and called Lisa, she said babies can be born with it , and i told my brother that he needs to call and get the name of a neo natal specialist from the foundation, and have the 2 two doctors phone conference, i see it as being the disease is in our family and i was born with it, then there may be a good chance that is what is wrong with the baby I will keep everyone updated as i get it, but i'm in Virginia and live they in Oklahoma Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

  • #2
    Re: New baby

    Dear Shirley,

    I'll keep little Hunter in my prayers. You're doing all you can to help your niece and the rest of the family make informed decisions. You're on the right track.

    About doctors and how little they sometimes know about HCM, my sister in law had my niece screened and her doctor told her that since she was clear at that time, about age 11, that she will always be clear. She told her that you're either born with it or you're not. Oh, my! I was so very angry about that one! I set the record straight.

    Good luck and again, I'll pray for the little guy.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: New baby

      Tank You Reenie
      We need all the prayers we can get, i haven't heard anything but no news is good news i guess. I told my brother to tell that doctor that i was born with the disease and so was our brother, and insist on an Echo, i told my neice you have that right. again thank you for the prayers for Hunter
      Shirley
      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

      Comment


      • #4
        Re: New baby

        well i think my great nephew is going to be alright,little Hunter has inproved over night, they think that the reason he stopped breathing was due to seizures beacause of his brain bleed, they still don't know if they are going to have to do surgery for his brain bleed, but his heart seems to be inproving, it's gone down a little in size, but my neice has still insisted on them doing an Echo for HCM just to be on the safe side, i agreed with her, I told her to leave nothing to chance with the little guy. You Know when it rains it poors, my father called me to let me know that one of my cousins was killed today, in a car crash, she was only 52 yrs old my dad says she was killed instantly and the other person walked away, well maybe next week will be better for the Mahoney household. thanks again for all the prayers, they have worked miracles
        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Re: New baby

          How are things going this week? My thoughts are with your family.

          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment


          • #6
            Re: New baby

            The baby is doing better, they still don't know if they will need to do surgery on his brain, but his heart seems to be doing better, the dr.s think that he stopped breathing due to seizures, because of the brain bleed, he is still in the hospital, don't know when she will be able to bring him home, my brother {grandpa} seen him for the first time Monday night he has been sick with phenmonia, he said the baby's head looked horrible even his face, he got stuck in her somehow, i told my brother it was probably the ribbed bone women have where he got stuck, and they pulled him out, with that plunger thing, i can't be in the room when they use that thing, i was with my grandson and i said never again, i normally do not have a weak stomach but i did that day, the dr. used it on my grandson, i about had a fit then, but they couldn't get the forceps in her, he was so big, 9 pounds 8 ounces 27 inches long, i told her she had a toddler thanks for all the prayers Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment

            Today's Birthdays

            Collapse

            Working...
            X