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.

10 Week old with possible HCM-Info please

Collapse

About the Author

Collapse

Burtnett Find out more about Burtnett
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 10 Week old with possible HCM-Info please

    Perhaps this is too soon for me to post here but I feel I need to get some feedback.. My wife and I have a 10 Week old baby girl, our third child. She has Down Syndrome and a complete AV Canal. She was due to have her heart repaired last week at Children's in Boston but surgery was cancelled at the last minute due to a cold and a new discovery in her echo. It looks like it could be HCM. The ped card were surprised to find this in addition to her other issues. They could only remember 1 or 2 kids in the past 20 years with all of these items. The doctors are all meeting Monday to discuss and we will have another echo and meet with them on Tuesday. Any thoughts or ideas. We are in a bit of shock.

  • #2
    Re: 10 Week old with possible HCM-Info please

    My son Dylan was diagnosed at 6 weeks of age with HCM. We just celebrated his 4th birthday this weekend. If I can be of any help in any way, please don't hesitate to email or PM me!

    Dee
    Dee, Mom to Dylan
    (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

    Comment


    • #3
      Re: 10 Week old with possible HCM-Info please

      Hi..

      I recommend calling the HCMA office and try to speak to Lisa.
      973-983-7429. It has been a long week at the HCMA and she may be a little behind in things. But if you give a call on Tues, you may catch her in the office.
      Ellen
      HCMA

      Comment


      • #4
        Re: 10 Week old with possible HCM-Info please

        I'm glad you've found us, welcome. As Ellen has told you, if you call Lisa in the office, she will get back with you as quickly as possible. It sounds like your doctors are on top of things and definitely working to ensure the best for your little one. If indeed it turns out to be HCM, this website is the place to learn about it. You will find much support from others on the message board. I'm sure people like Dee, who has already posted to you, will be able to encourage you and your family as you move forward from this point. Best wishes, and please keep us posted. Linda

        Comment


        • #5
          Re: 10 Week old with possible HCM-Info please

          It sounds to me like your doctors are watching her closely. That's wonderful! I also recommend calling Lisa. She will most likely have a lot of information for you and also may be able to tell you which doctors may be the best specialist for your daughter. Good luck with the diagnoses and please keep us posted.

          Reenie
          Reenie

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

          Comment

          Today's Birthdays

          Collapse

          Working...
          X