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Progonosis for new born son?

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  • Progonosis for new born son?

    My son was diagnosed with HCM within a day of his birth. Right now the
    HCM is idiopathic. He was negative for Barth's Syndrome and all
    metabolic causes of the disease have been all but ruled out. My wife,
    older son, and I are going have echos as this is usually a genetic
    disorder.

    His HCM is non obstructive and he is currently taking the beta blocker
    enderol. He is asymptomatic now, and seemingly a normal baby. His
    last two echos have indicated that the septum is continuing to enlarge,
    but that it was within limits that were not too concerning to the
    cardiologist. To me, enlargement is enlargement and can only have one
    conclusion.

    My questions are, will this continue to progress? Can he live to be an
    adult? I just don't know what to expect and that is the hardest part.

    I have a scientific mind, I find comfort in understanding, my wife on
    the other, hand just knows she has a sick baby. I can't ask these
    questions in front of her.

    Thanks,
    Chris

  • #2
    Chris,

    Welcome to the HCMA. You have a lot of questions and concerns. Please call the HCMA office next Tuesday so that you can speak to Lisa Salberg. Our phone number is 973-983-7429 and she will be in the office on Tuesday between 9 a.m. and 5 p.m. Eastern time. She will be able to help you with your questions and also make recommendations on how you should proceed. She has a lot of information that she would be more than willing to share with you.

    We look forward to hearing from you next week.

    Kelly
    Life is 10% what happens to you and 90% what you do with what happens to you.

    Comment


    • #3
      Hi Chris. Welcome to the HCMA. We have a few parents here whose children were diagnosed at birth or shortly afterward. Some of these kids are now in their early teens and have a good prognosis. Please do give Lisa a call. She will help you get started in learning about HCM and living with it.

      Reenie
      Reenie

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

      Comment


      • #4
        Originally posted by Reenie
        Please do give Lisa a call. She will help you get started in learning about HCM and living with it.
        Reenie
        Thank you all very very much. I told my wife about this site. I am sure she will want to give Lisa a call.

        There is something comforting just in knowing that someone understands what you are going through.

        Chris

        Comment


        • #5
          Hi Chris -

          My son was diagnosed at 6 weeks of age. The thickness of his septum was also very large. He's a happy little 5 year old now. The best thing we ever did for him was to educate ourselves and to take him to a pediatric cardiomyopathy specialist. Please feel free to contact me if you have any questions or just want to talk. I understand your wife's feelings so well. Please know you are all in my thoughts!

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

          Comment


          • #6
            Dear Mr. & Mrs. Chris,
            As you obviously know, HCM is a genetic disease so all of us that have been diagnosed with it – at any age – were actually born with it. I am now a happy little seventy-two year old boy who still gets much enjoyment out of life.

            Although I had undiagnosed symptoms most of my life, and was not properly diagnosed until I was seventy-one so I did not get proper care, I still expect to live a full lifespan – and wind up dieing of something else altogether.

            Your child has the advantage of being able to have proper care for his entire life. There will probably be some considerations, - of course – but in the things that really count, I expect he will very happy to be alive – as I am.
            Burt

            Comment


            • #7
              Chris, Welcome. I'm glad you've found us. You and your wife will be able to learn so much from others here. With this wonderful message board, there is always someone "on call" when you have a question or just need some reassurance that you are not alone.

              Please try to call Lisa (you and your wife may want to call when you can both talk). Kelly will help you with a good time. The # is at the bottom of the page. We wish you the best, please keep us posted. Linda

              Comment


              • #8
                Hi Chris and hello to your wife as well.

                I am so sorry to hear of your son's diagnosis. But, please know that this is not death sentence. Many people with HCM live a full life.

                My mom is 65 years old, she has HCM and she works full time.

                I know of one gentleman who was diagnosed as a small child and he is now 30 years old and works full time and has a full life.
                And his septum is 3.0cm. (Which is pretty large.)



                I wish you, your son and your family all the best.


                Eileen
                49 yrs. old
                Diagnosed at 31.
                Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                My brother passed away suddenly at 34 yrs old from HCM.
                2 teenage children, ages 17 and 15.

                Comment


                • #9
                  Hi Chris,

                  I am a mom to two children with HCM. Both diagnosed at birth. It was thirteen years ago on June 7 when we first heard the words (old term) idiopathic hypertrophic subaortic stenosis. I was twenty-five years old and scared out of my mind.

                  Thirteen years ago there was not a lot of information for a brand new mom with a baby diagnosed with a heart condition. You are very fortunate to have all this information readily available to you and have parents with experiences to help you cope. I really can't tell you how I made it through those first few years (denial I think). But alas we have made it and my children are now 13 and 10.

                  They also take propronolol (inderal) and have since birth. When they were babies it was liquid form, now pills. We have had many ups and downs with this disease over the years. We see our pediatric cardiologist every six months, or more often if necessary, and have echo's and EKG's. Sometimes we even have holter monitor tests, but all in all they are normal kids.

                  You will find a lot of information on this site and a lot of support. Good for you for reaching out and asking questions. This site will help ease your mind. Take a deep breath and find a really good cardiologist.
                  Michelle - mom to Krista and Tyler both HCM
                  Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                  Tyler surgery: 1/98 myectomy

                  Comment

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