Wolf-Hirshhorn Syndrome?

Imanonymous

Earning My Ears
Joined
Oct 29, 2015
Are there any parents out there whose children have this diagnosis? (Deletion of 4p?)

I've just found out my baby is diagnosed with this, and I am trying to get information. They've told me that the deletion is large and so some information may not apply to my child- but I'm wondering what abilities children with this, especially severe forms, may have. Will they be in diapers for life? Can they feed themselves? I was told it was possible he would not speak or walk, and will almost certainly have a seizure disorder- but I want to see what CAN he do?

I'm just a bit in shock.
 

DisneyOma

DIS Veteran
Joined
Jul 27, 2015
No info or advice, but I do want to offer you a (((hug))) You posted this almost a month ago, and I hope your baby is doing well and that you are getting some info that you need.
 

Imanonymous

Earning My Ears
Joined
Oct 29, 2015
Thank you for the hug. Unfortunately we lost the baby (at 29 weeks gestation). The doctors had prepared us that his condition was so severe he may not live, so this was not a huge surprise. Because of the severity of his condition, I do not think he would have been able to have any joy in life, so this is probably for the best, as hard as it is.
 
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  • Goddesstree

    Mouseketeer
    Joined
    Jun 24, 2013
    Thank you for the hug. Unfortunately we lost the baby (at 29 weeks gestation). The doctors had prepared us that his condition was so severe he may not live, so this was not a huge surprise. Because of the severity of his condition, I do not think he would have been able to have any joy in life, so this is probably for the best, as hard as it is.
    I'm so sorry. Even though your mind says 'probably for the best' your heart must hurt so much. (((hugs)))
     

    Imanonymous

    Earning My Ears
    Joined
    Oct 29, 2015
    Thank you all. We got his urn late last week, and while I had been doing well for 3 weeks, now I'm doing less well. That wasn't how I ever expected my first child to come home.
     
  • wilkeliza

    DIS Veteran
    Joined
    Feb 1, 2013
    Thank you all. We got his urn late last week, and while I had been doing well for 3 weeks, now I'm doing less well. That wasn't how I ever expected my first child to come home.
    My heart breaks for you. Do you have a good support system? My very good friend lost her first son as well and now runs her local M.E.N.D. chapter. I'm not sure if you are religious or not but a MEND group if you have one in your area may be somewhere you can go to get support from other mommies who have experience similar tragedies.
     

    3Gsandme

    DIS Veteran
    Joined
    Jan 18, 2013
    I am so sorry. Please take care of yourself and your partner. Be kind to yourselves.:hug:
     

    tiggergal15

    Mouseketeer
    Joined
    Apr 28, 2015
    Aww..I'm so sorry for your loss..:hug: hugs. As mentioned I hope you have a support system to help you at this very difficult time...more hugs.
     


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