Expecting first child and found out at 20wk scan that our baby has a birth defect

Hello, I am expecting my first child and I am currently 27 weeks pregnant. At our 20 week scan we found out that our babys left leg has only developed up to the knee so she has a missing limb. This was a huge shock to us but we have come to terms with it but I am looking for anybody who has been through this or knows of anybody in a similar position. Thank you :)

Comments

  • Hi @NatashaThomas and welcome to the community. You probably have a lot of unanswered questions at the moment. We're glad you've found us and we hope others who can identify with your situation will be along soon to share their experiences. We're still a fairly new community so you may not get a response straight away but stick with us! It might be a good idea to say hello in the Introductions section as well.

    If you have any questions about the community, or need any help finding your way around the boards, please don't hesitate to ask.

    Take care

    Alex (Contact a Family)

  • PageaPagea Member

    Hi. Sorry you're having to deal with this. I have a friend whose daughter had the same happen but with her arm. I know it's not quite the same but she is now nearly a teenager and a champion runner and surfer. Hope all goes well with the birth and that your baby is otherwise healthy! X

  • Hi @NatashaThomas

    Hopefully you will get some parents sharing their experiences here but in the meantime, you may also like to know about Steps, a national charity that supports families who have children with lower limb abnormalities. This includes their Family Contact Service that can help link you with others in similar situations. I hope you find this helpful.

    Take care

    Alex (Contact a Family)

  • RvSRvS Member
    Hello, I am expecting my second child and I am currently 21weeks pregnant. At our 20 week scan we found out that our babys both arms are fixated and do not move. It looks like Arthrogryposis multiplex congenita, but in Holland (where we live) there's no one with the same conditions, so we cannot exactly find out what it is. I just wondered if there was anyone else on here with a child with the same condition I could talk to. Or someone who can tell me it's not rare. thanks
  • Alex_ContactAlex_Contact Moderator
    Hi @RvS

    Welcome to Contact’s community. We hope we can help you feel at home and find others like you.

    Contact has information on Arthrogryposis which may be helpful for you to look at; this includes information about the national support group TAG

    Any questions, do just drop us a private message and we’ll be happy to help.

    Take care and welcome again

    Alex (Contact)


  • Hi RvS
    Our little girl (now 10 weeks old) was diagnosed with Arthrogryposis when she was just 6 days old. More lower limb, but some stiffness in her arms and hands too. She is getting physiotherapy for upper limb stiffness at the moment and lower limbs are in casts due to bilateral talipes. In a few weeks she will have surgery on her hips as they are also affected. 
    We live in Wales and physiotherapist says she's got 4 other children with Arthrogryposis.

    Our daughter is amazing tho. She wakes up every morning with a smile and is not bothered by the casts. We have a long road ahead but I find taking things one step at a time makes life easier. For the time being anyways. Not sure if I can answer your questions, but I'm here for a chat.
  • RvSRvS Member
    Hello violetsareblue, 
    thanks for your support. It is nice to hear your daughter is doing well and she's a happy child.
    In Holland there are also children with arthrogyposis. But the vast majority have both legs and arms affected. Now I am wondering if there are people who only have their arms affected with arthrogyposis, to see what we could expect with our baby. Or is it a rare thing to have only the arms affected?
    When our child is born, I think we will also start with physiotherapy. And find out what kind of diagnosis he/she 'll have.
    I wish you and your daughter and family much luck for the future.

Sign In or Register to comment.