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  • My newborn has HCM

    I delivered a beautiful baby boy, Jake, 10 weeks early on July 5th, and he has been diagnosed with HCM. The cardiologist scared me, and I live in fear of the phone ringing (he's still in NICU at Children's Hospital in Atlanta - I live in Covington, GA). I am just terrified that he won't make it. Does anyone out there have ANY experience with a newborn or preemie who has been diagnosed? I'm just finding out what HCM is and it's scary and hopeful at the same time. I have no idea where to start!

  • #2
    Re: My newborn has HCM

    Hi Mom,
    Start right here. Read all the information at the front of this site. It will give you a general understanding of all the ins and outs of this malady. Then of course you can ‘search’ the postings for things of interest to you.

    I would also suggest calling NICU at Children's Hospital, and Jake’s attending physician, for status reports. Today he’s three weeks old and still getting stronger every hour of every day. Obviously he’s not out of the woods yet, but there is every reason to hope for the best.

    Before you know it he’ll be dating and asking for the keys to the car. First you can’t wait to take them home, then you can’t wait for them to move out on their own. It’s a wonderful world. Try to stay calm and get as much rest as possible. Once you do get him home, he will consume every minute of your time.

    I wasn’t a preemie, and my memory doesn’t go back that far anyway, so I really can’t tell you what it’s like from Jake’s point of view. I have known quite a few preemie’s who grew up to be totally normal human beings, and I’ve lived with HCM for almost 72 years so far. – I have no plans of going anywhere - in the near future at least. Most things are surmountable in today’s world – take heart.
    Burt

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    • #3
      Re: My newborn has HCM

      Wow - thank you! Just hearing from someone makes me feel better. My husband loved your reply. PMA - Positive Mental Attitude is his motto right now (he's my rock), and he thinks that's exactly what you've provided.

      I continue to consult with the cardiologist - she's absolutely wonderful about coming around when I have questions - and I've contacted Lisa personally to see if she can point me in the direction of an HCM specialist in the area. Again, I can only absorb so much info on HCM at a time. It's quite a prickly pear, this one!

      Debbie

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      • #4
        Re: My newborn has HCM

        Debbie,

        I'll be praying that Jake has a long and joyful life and that you both enjoy it with him for many years to come! (You do know that you and your husband need to be checked now, don't you?).
        Rhoda

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        • #5
          Re: My newborn has HCM

          Debbie.

          We too will pray for the adjustments that come with a new baby with HCM. Please get yourselves checked out as well. We want Jake to have grandparents to show his kids someday.

          Peace,

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

          Comment


          • #6
            Re: My newborn has HCM

            Getting so many wonderful replies and messages, here and privately. I'm forwarding them all to my husband for reassurance.

            Yes, we know we need to be tested. I've been diagnosed with a mitrovalve prolapse and murmur, but no one has ever looked at any of my echos and diagnosed anything else as far as abnormal muscular development. However, now that we have Jake diagnosed, my next echo will be looked at more closely for that (I'm getting the feeling that many times these things get overlooked?), as will my husband's (we will also have his 13 year old daughter screened). Again, the cardiologist attending my son presently didn't seem at all interested in my condition, so when we are able to find a pediatric HCM specialist in Atlanta, we'll review that.

            I have contacted Lisa and will be talking to her later today. I'm looking forward to it and am absolutely feeling the warmth of my new "family" out there. I'll be posting a photo of Jake as soon as I can get it to 6 mb. He's so beautiful it hurts!

            Debbie

            Comment


            • #7
              Re: My newborn has HCM

              Debbie,

              I personally know exactly how you feel! My daughter, 13 years ago, was also diagnosed with HCM at birth. Scared me to death. I never heard of the disease and had no experience with it. At that time, this wonderful support group was not around. I floundered and tried to learn from medical books as much as I could. I trusted my doctor explicitly. He put her on medication (propronolol) and we saw him every two weeks at first, then monthly, then every 3 months, now its every 6 months. As I said my daughter is 13 now. She is living with HCM and doing great. My son also has HCM, diagnosed at birth, but with it being the second child, I knew what was in store and felt much more comfortable and less frightened.

              Be thankful you have found this site so early in your son's diagnosis. It will ease your mind to hear all the success stories and know that there are poeple in the same shoes as your son. I sure wish it was there when I first started going through this.

              Take care,
              Michelle - mom to Krista and Tyler both HCM
              Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
              Tyler surgery: 1/98 myectomy

              Comment


              • #8
                Re: My newborn has HCM

                Michelle,

                Thank you for the wonderful e-mail!! So many pioneers here to rely on - it's a blessing. I don't know how you managed. Did you sleep at all for the first 3 years???? Your kids are beautiful. I'd like to hear more about their activities and what they're capable of doing. I was focused so much on the LIMITATIONS at first, and the more I hear from all of you, the more I'm opening up to the POSSIBILITIES and shedding the negatives (while remaining realistic). It seems you'd know exactly what I mean by that.

                Grateful to you all,

                Debbie

                Comment


                • #9
                  Re: My newborn has HCM

                  Debbie,

                  All my prayers will be for "LITTLE JAKE". Stay positive and be strong. We are all here to support You and Jake...

                  Tigger1
                  " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                  Comment


                  • #10
                    Re: My newborn has HCM

                    Hi Debbie
                    First of all Congratulations! It's the most horrible feeling in the world isn't it when we think something's wrong with our kids? It must have been very difficult for your family. You've found a great site for information. People here are very friendly and knowledgable. Burton sure sounds correct that Jake will be home in no time and dating the next. Time goes by so fast when we don't want it to. Right now time is probably standing still for you.
                    I love the name Jake. Please let us know when he gets home and God Bless you and your family.
                    Tammy

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                    • #11
                      Re: My newborn has HCM

                      Hey Mom!

                      Keep up the great work!

                      You are in our thoughts and prayers!

                      The Brown Team
                      \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

                      Comment


                      • #12
                        Re: My newborn has HCM

                        Hi everyone! Thanks for the new messages and support and cheers! Still about 4-6 weeks from coming home, and of course we'll keep everyone posted. Check out the small but beautiful picture of my boy!! Burton, how'd you get your picture so big, anyway???

                        Everyone's in my prayers, too. Now when I pray and fret about all this I have a whole new family of people to think of. God doesn't seem to mind much.

                        Debbie (and dad Chris and Jake)

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                        • #13
                          Re: My newborn has HCM

                          Debbie and Chris, Jake is such a sweet little bundle. Our thoughts a prayers are with you and we will rejoice with you when he comes home.

                          Keep us up to date on Jakes progress.
                          Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                          Comment


                          • #14
                            Re: My newborn has HCM

                            Sharing a story:

                            Last week I spoke to a wonderful woman who was diagnosed with HCM within the past year. She had never had many symptoms but had been born with a significant murmur and through her life always told she had a unique murmur. She was diagnosed last year and now MAY be looking at myectomy as an option (small septal size and lots of MV issues). Why am I sharing this story on this thread .... This new person is 73 years old and was born with a significant murmur!



                            Thought you would like that story!

                            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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