Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Sue, I am sorry to hear of your friends situation. There are a few moms on our support group that have children with congenital scoliosis. They might be able to offer some advice.. Did you say that the baby in utero was diagnosed with scoliosis at 5 1/2 weeks old? I have never heard of it being diagnosed so soon. ( It must be very obvious in the x-ray..) So the docs are detecting structural spinal abnormalities? or have they said its just a severe non structural curve? I wonder if there is a way to measure it in the womb? I am sure its too soon for an MRI, but have they taken any other x-rays? Whats the docs name, and did you say your friend was being seen at the Royal National Orthopaedic Hospital in Stanmore? Have you contacted the SAUK, or The Arise Foundation? Sincerely, R. Hyatt Exec. Director The Infantile Scoliosis Outreach Program 303 233 1746 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 A very dear friend is 22 weeks pregnant they have told her her little baby has scoliosis.We are waiting for all her tests to come back .so far he seems fine all the organs are all the right size as is he.we cant get any help other than that she can still terminate the baby.we are waiting on the royal childrens hospital specialist to contact her. she is a single mum and 22yrs old can anyone help us so that she can make the right decision.we want to help and be there for her but we need to understand what is involved. SUE WOODS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Hi Sue, My son was diagnosed with Scoliosis at 8 weeks old.(after he was born) I had 2 high tech ultrasounds and an amnio during my pregnancy and there was no sign of Scoliosis. The first thing they checked for after his diagnosis was Neuromuscular Disease and also Congenital Scoliosis. Neuromuscular disease would be Muscular Dystrophy etc. What about getting some genetic testing done to see if she is a carrier? Also Spinal Muscular Atrophy was a worry for us but he was negative for that also. I feel so badly for your friend, this is heartbreaking because it seems like something must be causing it for it to be found so early? I don't know what to tell you other than speak with the Dr.'s about Muscular Dystrophy or SMA type 1. I am NOT a Dr. just a Mom who has gone through health issues with my children. Also, I would get a 2nd opinion about the diagnosis of Scoliosis. Good luck to your friend Sue, my heart hurts for her. Sincerely, Crista Quote Link to comment Share on other sites More sharing options...
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