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Osteogenesis Imperfecta

chelsealushchelsealush member
in Special Needs

Just wanted to update a little. Way back in June/July last year I was searching for ANY information on OI/brittle bone disease. I was 20 weeks pg in June and was told my baby would not live and to terminate. Fast forward, baby Zoe is now 5 months old! Its such a hard disease to randomly break bones and I know that I had a hard time finding out any information when I just started my research. We have a great FB support group and an awesome Yahoo Group support group.

FB - https://www.facebook.com/?ref=hp#!/home.php?sk=group_155410451165056&ap=1

 Yahoo -  https://health.groups.yahoo.com/group/OIparents/

 

Just to give a little insight, at my 20 week anatomy scan baby Z was showing short femurs and arm bones, 4-5 weeks behind what they were supposed to be and very bowed. (OI can be dwarfism - Zoe at 5 months right now is just fitting into newborn clothes)  The next week they started fracturing and that is when we were told to terminate. We chose not too and had ultrasounds every 3 weeks after with grim news and new fractures showing up. We were told she wouldnt be able to breath on her own becuase her organs would grow correctly but her bones are small and so her heart would outgrow her lungs and her lungs wouldnt grow big enough and they wouldnt be able to breath when she was born. Well, Oct 24th, Zoe was born needing no help breathing! (although with a few new fractures). Zoe has Osteogenesis Imperfecta type 3.

 

If you ever hear of anyone asking questions about OI or having their ultrasounds sound similar PLEASE send them my way!! my email is chelsealush @ gmail dot com.

 

mom to baby Zoe, DX Osteogenesis Imperfecta type 3, over 50 fractures since birth, 4 surgeries, uses a wheelchair, severe sleep apnea, mild hydrocephalus, beautiful blue eyes.
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Re: Osteogenesis Imperfecta

  • mskolmanmskolman member
    My mom was a special education teacher and had a student in middle school with this many years ago. My mom is recently retired and still is in constant communication with her former student. Her student is now 30 years old and lives on her own, of course with assistance. She is an amazing woman! She has been through a lot in her life, but yet she is full of giggles. I am so glad your LO is doing so well!
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  • ToastieSimonsToastieSimons member

    I know this isn't much help, but in the TV Show, The Middle, the kid who plays Brick (Atticus Shafer) has OI.  He's been in a few movies.  https://www.imdb.com/name/nm2557831/

    it just goes to show that kids with OI can lead very fulfilling lives.

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • JOEBunnyJOEBunny member
    I am so glad she is doing well.  I remember your post because my uncle has Fibrous dysplasia.  Congrats on your sweet baby.
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