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.

My baby has HCM

Collapse

About the Author

Collapse

HCMA FORUM ARCHIVE Find out more about HCMA FORUM ARCHIVE
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • My baby has HCM

    [My baby has HCM]

    Author: LAURA SMITH (---.bardstowncable.net)

    Date: 07-30-02 16:15

    To Whom It May Concern:

    I gave birth to a wonderful little girl on May 15, 2002, right away we knew there was problems. She had to be resisitated, many problems arose. I didn't get to hear her cry for 34 days.

    She was rushed to Kosairs Childrens Hospital where she was placed on the ECMO machine which is a life support machine for 2 weeks, ventilator, feeding tubes, etc. It was an experience I never realized could happen. It was a nightmare. Just like a rollercoaster ups and downs, didn't know whether she would make it and if she did what could we expect, from lack of oxygen to the brain?

    She was diagnosed with Persistant Pulmonary Hypertension and Hypertrophic Cardiomyopathy. She is home now but has been home only for a couple of weeks, back in the hospital for feeding issues, heart failure, colds, on and on.

    I guess I just want someone who knows what I'm faced with to talk to me, support and be my friend. I feel so helpless.

    Thanks,

    Laura Smith

    3235 Pottershop Rd.

    Bardstown, KY 40004

    502-348-0199

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-30-02 18:20

    Dear Laura

    I'm so sorry that you are going through this ordeal. Please feel free to call the HCMA office at 973-983-7429 to get the names of pediatric HCM specialists.

    All our thoughts and prayers are with you.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-30-02 20:21

    Laura,

    I just tried to call you but there was no answer, I'll try later. I know you must feel very confused and upset by of "this", I just want you to know that you are not alone.

    I am looking forward to talking to you and hopefully answering some of your questions regarding HCM. I know you have read the message about little Aspyn and I am sure this was upsetting. Please know this is not how all stories end, and in many cases there are positive outcomes. I wish I could say everything is going to be fine, but I can not, I can say that many with HCM live normal lives with miminal medical intervention.

    Has your daughter been evaluated for medibolic disorders?

    If I do not catch you by phone, please try to call the HCMA.

    Best wishes,

    Lisa Salberg

    HCMA

    973-983-7429

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: LAURA SMITH (---.bardstowncable.net)

    Date: 07-31-02 12:15

    Lisa,

    I have gone back to work...I had no choice with money issues, etc. , so that is why you couldn't reach me at home. Phone number at work is 502-348-9003. I just received an email from Elizabeth Steva who has spoke with you before and was telling me how wonderful you are.

    My little girls name is Autumn Nicole she is so wonderful, I have two other children - Ashley who is 3 and has a PDA problem with her heart, Hunter who is 6 and is also having problems, vitiligo I think I haven't gotten him to a dermatologist yet. My life right now is crazy.

    I guess I just want someone to tell me what to expect, if anyone knows, I try to take it day by day.

    Thanks for listening.

    Laura Smith

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: LAURA SMITH (---.bardstowncable.net)

    Date: 07-31-02 12:18

    Sarah,

    Thanks for your prayers. Prayers have gotten through so far. Jesus is definitly with us. The hospital said she was a miracle baby and I believe that.

    Laura

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: LAURA SMITH (---.bardstowncable.net)

    Date: 07-31-02 12:48

    Lisa,

    I was just reading about how HCM is hereditary. No one in my family has ever been diagnosed with this. Should we be screened?

    Thanks,

    Laura Smith

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-31-02 15:23

    Laura,

    You and your husband should be screened ASAP and you should have your other children screened as well. Your parents and siblings should also be screened. If you have any further diagnosis in the family you may need to go further into the family - cousins etc...

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: KATHY (---.proxy.aol.com)

    Date: 07-31-02 20:43

    Laura, I feel the same emotions as you are right now. My little boy Matthew was diagnosed with HCM at 2 mos old and he is now 6 mos old. He has many other medical issues, Wolf Parkinson Whites Disease,and some form of Muscular Dystrophy, and like you I also have older children, who seem to show no signs of HCM. I am very thankful for everyday that I have with him. I have to work do to financial situations as well. I have just recently found this web site, and have read alot of encouraging stories. I have yet to touch base with Lisa, but do intend to do so this week around my hectic schedule.

    I am lucky for the fact that Matthew has only had 1 cold since he has been born. But it does scare me to think that if he gets any type of cold, ear infection or virus

    what may occur.

    If you wish to talk any time, just drop me a note. It always seem to help me more as time goes by to talk about Matthew and how he is progressing.

    My thoughts and prayers are with you.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: Stacy Block (---.mis.prserv.net)

    Date: 07-31-02 21:29

    Laura,

    I know to well what you are dealing with. After we found out everything Aspyn had going on, we didnt know what to do. We had to treat her as if she had an immune difficiancy so she couldnt be in daycare and I had to stay home. (which was a huge financial shock) I am so glad I had the chance to spend all that time with her, I would give up anything for her. I was in such a shock after finding out all of her conditions and the only thing that kept me going was her! After many nights of no sleep and wondering what the next day would bring, I finally stopped dwelling on her condition and started dwelling on her. What she had was out of my control and I decided to take control of the only things I could......my own life and living every minute as if it were my last. I would give anything to spend one more day with her, but I know that every day I had with her was a blessing and that she truley was a miracle.

    I dont know if what I am saying will give you any comfort, my words never come out how I want. But just know that many people are thinking of you and your baby and our thoughts and prayers are with you.

    Stacy Block

    (Aspyn's Mommy)

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: My baby has HCM]

    Author: michelle (---.proxy.aol.com)

    Date: 07-31-02 22:22

    Laura

    I also have a baby who was diagnosed at birth with HOCM.. Her name is Elizabeth and she is 7 mos old now. The doctors told me she would not come home from the hospital and she is a happy smiling baby now. This is not to say that she is not ill. She has a very serious condition. I have been to two pediatric cardiologists that specialize in ped cardiomyopathy. They are not even sure of the outcome for Elizabeth. I try to live my life one day at a time and enjoy each day as it comes. I have three other children who need me also. My faith in God has certainly strengthened in the last 7 months. Her life is in His hands and I have to give up control to Him. I don't know if my words help but I hope that knowing there are other people out there going through what you are helps. My thoughts and prayers are with you.

    Michelle
    NOTE: This is a post from the previous forum message board.
Working...
X