Skeletal Dysplasia

nicolejoy

nicolejoy

Registered User
Does anyone know much about Skeletal Dysplasia, or have any experience with it? My 2nd child, due in July, has just been diagnosed with it. From reading about it, it seems like there's a 50% chance she won't make it and another 50% chance that she will live but with mostly physical disabilities (not mental as well). It's quite hard to diagnose before the baby is born but we should be able to get an indication of whether it is lethal or not at least by the time I'm 30 weeks... (I'm currently only 18 weeks along). We will not terminate regardless - I figure while the heart is still beating, there's still hope. There have been babies with lethal diagnoses who were misdiagnosed and made it. And I want to give our little one every chance that I can...

I've started a blog at Holding onto Hope if anyone wants to read on there...
 
Dear Nicole
I'm so sorry you've had this extremely worrying diagnosis - I'd read your post a few weeks back about an abnormal scan and how you were awaiting further tests, and I was hoping to see you post good news soon. I really hope your baby has only the mildest form of skeletal dysplasia and that the outcome is as positive as can be expected.

Sorry I can't really give any comfort - but just wanted to send a cyberhug (((()))) and let you know that you're in my thoughts.

best regards
Honkyblues
 
Thanks so much. There's soooo little information/support etc out there for things like this. Back when we were thinking it might be Downs, I looked online and there was SOOOOO much info it was crazy, support groups, blogs, forums, you name it. With this, there's hardly anything though... but I've found a few blogs and stuff... and now I guess there's one more!!
 
Dear Nicole,

I haven't been on Geobaby for a while so I am sorry to learn the news of your baby today. Just wanted you to know that I will be thinking of you both through this difficult period.
Stay strong. Stay optimistic.

Jules
 
Hi Nicole

Just wanted to let you know I'm thinking of you, your bub and your family. I pray that you get a positive outcome.

And thank you for sharing your blog, its a shame there is such little information available. Through this you will be helping those that will follow in your footsteps.

Take Care
Julie
 
Hi Nicole

I only just became aware of the situation.
I just wanted to say that I'm including you in all my prayers.
Virtual hug from me today. Take care!

Cheers!
 
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