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Brittle Bone Condition!

I had my little angel on the 8th of April and was diagnosed with brittle bone disease because even at birth, she had most of her major bones broken.

She pulled through the early critical hours and i was told that there was no cure for it but management. she was scheduled for major operation when she clocks one year.

she grew to be so lovely and there seemed to be nothing wrong with her anymore. even the deformed limbs straightened out themself and at the point i thought she was ok, she had just a slight cough and flu and then with just some few hours, respiratory failure and off she slipped off!

it's been so hard on me and i have tried to justify the event as probably being the best for her to go and rest, but i feel so much of vaccum within me with her exit.:cry:

Replies

  • Oh my Angy, I don't know what to say except I am so very sorry. No mummy should have to let go of their baby. I have no experience with brittle bone disease, but my heart goes out to you and I sincerely wish you and your family better days. I am sorry if I am saying everything you never want to hear, I know I am really capable of putting my foot in my mouth. Please join us here, the women are all really supportive and friendly. We are all here if you want to chat, and would be happy to listen.

    (((Hugs)))


    ashley
  • I am so so sorry for you and my heart goes out to you.
  • Thanks all for the words of comfort. i must really say that i enjoyed all i read on this site and how caring u all are. It's really sad that I lost my little Angel cos i was just too used to her and after 4.5 months, i thot the hard times were over and then she just died of the most common thing kids go thru now and then. I was made to understand that her rib cage was not so strong to cope with the cough and that led to the respiratory failure.

    I had my first daughter in 2003 and i couldn't have another since then till i had my little Ruth in April 2008. I was actually told i couldn't have another but miraculously i did. Then when the condition was diagnosed at 28weeks, i was asked to have an abortion and i refused, so i knew i had a lot of challenges ahead of me.

    I must confess that when the medical plan was laid out for us, i became sooooo scared of what she has to go through in life - talking about putting in metals to support every bone in her body, a lot of theraphy and so on, i couldn't bear it but i decided to take each day as it comes for as long as God gives the grace. The only thing was that she was to undergo the surgery when she is 12months n above, but she didn't wait for it. lol.

    While i miss her sooooo much, i have consoled myself in the fact that she didn't have to go trough that painful ordeal whatsoever and with the fact that she was smiling at me all the time they tried to resocitate her at the ICU, she wouldn't even take her eyes off me, she just kept smilling till she died. I was so glad she was happy!

    I pray for Grace & Strenght to every mother out there with kids with special needs!
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