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Baby Alexandar

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lidija Find out more about lidija
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  • Baby Alexandar

    My son Alexandar is 7 months old, and has severe HOCM. Although for the moment he looks asymptomatic, the worst has been drummed into us since his diagnosis at 4 weeks of age. The cardiologists are now considering operating to bring down the size of the intraventricular muscle and releive the occlusion, even though this surgery on babies is uncommon, certainly in Aus. The thought of handing my child over for a risky procedure just shuts my mind down. I can't put into words the million ways my heart is breaking for him, and for his sister and the rest of the family. We are trying really hard to surround him with happiness, but it's hard and we are always a couple of stray thoughts away from tears. I know that only God can spare his life, and I have asked family and friends to pray for him, and to pray that the medications work to bring down the occlusion. To anyone out there who can throw a prayer his way, I thank you most sincerely.

  • #2
    Re: Baby Alexandar

    Hi Lidija.
    We will gladly lift up baby Alexander and your family in prayer! Keep us posted as to what is happening and how we can pray specifically for you.

    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

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    • #3
      Re: Baby Alexandar

      Prayer will be sent, thought will be positive and I hope you know that MANY childern born with HCM have lived well and grown up to have rather normal lives.
      I would suggest Mayo or Totonto for a procedure on a baby - they have the greatest amount of experience.

      Best wishes...and big hugs,
      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)

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      • #4
        Re: Baby Alexandar

        Lidija, I will be praying for Alexander and the entire family, Linda

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        • #5
          Re: Baby Alexandar

          Lidija

          Know that a family in Virginia is also praying for your baby and family, if it were my child i would want the best surgeons in the world to operate on my child, I sure would be asking around.

          Thoughts and 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

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          • #6
            Re: Baby Alexandar

            Thank you all so much for your words and prayers. If it comes to surgery, then we will certainly be looking for the best place to have it done, and I don't think that would be Sydney. It is good to read that babies can survive this horror. We have basically been given the bleakest of outcomes, but anyone who sees Alex comments on what a healthy baby he is. I guess this is what makes deciding what to do so hard. If he were suffering in any way, then it would make the decision a little easier. I just pray every day that his body may overcome this and stabilise. Aha - I can hear His Masters Voice - he's been partial to midnight milk snacks since Summer has arrived. Off to feed. Thank you again, and may God Bless you all and bring you much love over Christmas.

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