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Arthrogryposis as a neuromuscular illness, any experience?

(3 Posts)
Charms28black Fri 28-Apr-17 15:50:09

Dear ladies, I'm looking for any information or stories you may have about babies with neuromuscular arthrogryposis. I'm 22 or 23 weeks pregnant with my 4th (2 miscarriages at 6 weeks and one full term stillbirth) and now know this baby has arthrogryposis in all 4 limbs, severe in the legs/feet and not showing breathing movements. I'm feeling pretty hopeless so I suppose what I'm asking is does anyone know of a similar situation and what was the outcome? I'm prepared for the worst but I can't give up on my poor little baby just yet (I'm not considering terminating I mean hope that it can live). Thank you

vinceb Mon 29-May-17 15:36:00

Hi Charms... Arthrogryposis is quite a rare subject on here... Our little one was diagnosed with distal Arthrogryposis. Severe talipes with 6 on the pirani scale... Our 20 week diagnosis was a nightmare but we were referred to Kypros Nicolaides who is a world expert in nenonatal medicine... I can't offer any real advice apart from doing what you think is right.. We were told at the 20 week scan that our daughter would either die before being born or soon after and that termination was the only option.. She was 3 a few weeks ago and her talipes has been corrected (she's in boots and bars). She had quite bad wrists when she was born but they seem to have loosened up considerably.. I wish you luck and always try and be positive! Hope it all goes ok.

Charms28black Mon 29-May-17 22:36:06

Thanks for your response, it's very helpful!! Any info at all helps

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