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MomofDoraExpert Find out more about MomofDoraExpert
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  • New to Forum

    Hello - I'm new to this forum.... My Dora Expert, Emily, is 4 y/o (5 in July), and was diagnosed with HCM & WPW 12 hours after birth... We were very fortunate, because a series of events happened, and if one event was missed, we may not have her with us.

    I had Pre-Eclampsia starting at week 35. This got worse, and we decided at week 38 to induce labour.... Labour was progressing slowly, however with each contraction, Emily's heart would stop, so an emergency C-Section was immediately planned, and Em was born bright eyed (literally) at 10:30 that night...... She was only 17.5 inches long, & 5.2 lbs. (Dr. later told me that my placenta was 'hanging on by a thread', which accounted for her low birth weight)...

    Due to low birth weight, Emily was diagnosed at hour 3 with low blood sugar, so she was taken up to NeoNatal for Glucose IV. fortunately she was automatically placed on heart monitor... I had went up to nursery to see her the next am, and there was a team of docs around her, and her now Cardio took me out into the hallway and explained that Em had an arrythmia event (325 bpm), a nurse happen to be standing near by with a cup full of ice for another mom, and when monitor went off, the nurse dumped the ice on Em's face, shocking her back. Needless to say, I was quite shocked and spent the next few days in pure shock..... Em was placed on Propranolol, and had no more episodes in hospital. We left with her dx with Failure to Thrive and Wolfe-Parkinson-White Syndrom (WPW).. A week after going home, we had our first Cardio visit, where an Echo & ECG also showed HCM... Talk about devastating news.... But the Cardio explained the events that I went through, if one was missed, Emily may not have been with us today......

    Today, Em is a very energetic kindergartner, full of life and promise... We have monthly episodes of arrythmia (we've now maxed out weight limit for Atenolol), and the occasional "my heart hurts". Emily is very good at school/babysitter's to stop activity when this happens, even during gym activities (she tells the teacher "I have to sit down, my heart hurts, but don't worry it will be better soon")

    Her Cardio has given her a no activities restriction, so we are going to try T-Ball this year.. She wants to play soccer like her best friend, but I just can't do that, not with the running. T-ball is quite passive at this age, and still allows her to feel she 'belongs'.

    Emily takes her Dora the Explorer doll along on Cardio visits, because Dora has to get her heart checked, too (the techs are great to 'place leads' for a quick check, then they give her a copy of Emily's printout, too)

    While my heart leaps out of my chest each time Em complains of heart problems, I know I cannot keep her as a hermit, either... So I cherish each day like it is her last (as it could be). Many people I've talked to here take HCM as a death diagnosis, but I guess I look at it as though maybe God was telling me to slow down and appreciate what I have.... As well, I've had Lupus/Rheumatoid Arthritis for 6 years, so dealing with a chronic condition is not new to me...... It is a matter of changing your thinking, tho, and thinking positively no matter what certainly helps.

    My heart goes to all out there... I'm glad I found this forum and look forward to frequenting!
    Michelle DePaepe
    Mom to Emily DOB 2000
    Dx with HCM & WPW 12 hours after birth

  • #2
    Welcome,

    I think your out look is wonderful and that your daughter is very lucky to have a mom like you!

    I hope to see you often here on the board, you will find it a very supportive and caring community.

    Best wishes,

    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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    • #3
      Thank you for sharing your story. I'm glad that the events in Emily's first hours of life happened just as they did. I can't imagine the outcome if they hadn't. I hope to hear more from you soon.

      Reenie
      Reenie

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

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      • #4
        Welcome to our site . I too am glad you found us all here . No one person should ever have to go it alone when they or a loved one has HCM or any other chronic condition. Emily is indeed lucky to have you as her mom.

        Pam
        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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        • #5
          Welcome!

          Wow! You really had a lot to deal with right after the delilvery! I am so thankful she was diagnosed and everything happened at the right time! My daughter's name is Emily as well and I almost lost her in a Car wreck this past September. She was on life support for several weeks and in rehab for several months. She had a traumatic brain injury. She is now 10. My son was diagnosed in January with HCM and we are now dealing with that as well. I am so glad you have found this forum. It has been awesome and a great source of support! We look forward to seeing you on the board! Janet
          My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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