I’m Still Lejendary

My pregnancy was like any other pregnancy until my 20-week anatomy scan. We found out that our baby boy had Amniotic Band Syndrome and would have only half a portion of his right arm and a full left arm. I, like many others, had no idea what amniotic band syndrome was and had never met anybody else with it.

I was initially sad, fearing the torment and all the things he would not be able to do. Of course, everyone who is not going through it has encouraging words, which I appreciate but I wanted to hear it from the people who were in the trenches with us. Anyway, that helped us to give him the perfect name. Lejen (Legend). He will be great just like all the other people who are born with this “condition” not “illness” or “disability”. I just want to encourage the world to gain awareness and tell a friend of a friend!

12 thoughts on “I’m Still Lejendary

  1. I just found out on my 20 week ultrasound that my son has ABS affecting his right lower portion of his arm. Reading stories seem to help me process this information a little better.

  2. My son was also born exactly like yours. I knew he had abs when they couldn’t find his right hand. (His right half portion and hand are also missing) how is your baby doing right now? During my pregnancy they kept telling me it wasn’t there to begin with even though I saw both of his hands in the first ultrasound I had.. After he was born (July 14) they finally diagnosed it

  3. Jim Abbot was a legendary pitcher for the Univ of Michigan and in MLB — he had amniotic banding and was missing a hand also! He pitched a no-hitter in 1993 and retired with a 4.25 ERA!!! And to top it off, he’s a super-smart, un-godly handsome, sweet guy. He does motivational speaking now I think.
    My daughter was born without her lower left limb –transverse amputation below the tibia and fibula leaving just vestiges of ankle and foot that were removed surgically when she was about 6 mos old. It was scary when she was born as we had no warning on the amniotic banding. By 6 mos she was pulling up to cruise around clinging to furniture and after her surgery she got her first prosthetic. She was walking at 9 mos!!! Our motto: “who needs two?!” She’s as active and perfect as she could be now at 12 years old.

  4. I think he is the cutest little thing!!! I was born just like your son 34 years ago. Don’t be discouraged. I think I turned out great. I’m a teacher with a master’s degree and I’m happily married. I grew up with plenty of friends, played sports, competed in dance and cheer, etc. I think having a baby arm is a gift. It sets me apart and it’s made me a stronger and confident person. Your baby boy is just so incredibly adorable!!! I think even more adorable than other babies but maybe I’m partial.

    1. Thank you for your response, I’m a mom to a 10 month old baby girl born with a transverse deficiency below her right elbow and I worry about it around the clock. Thank you for sharing your experience.

    2. I have a daughter missing 3 fingers on her right hand from ABS and it gives me some relief to hear you were a confidant person growing up. With a world full of bullies it’s scary thinking how it will effect her. I’d love to know how your parents addressed it with you as you grew up. As a mom I want to be the support she needs and say the right things. She’s 2.5 now and becoming curious about her ‘little nubs’. Any advice would be so appreciated.

  5. Thanks for sharing! I’m 12 weeks pregnant right now and was diagnosed with ABS at 9 weeks. It’s been lots of ultrasounds the last few weeks. For now, I’m just doing lots of research and looking at stories of other people who have knowledge of ABS!

    1. How is it exactly diagnosed? Is it because the lack of development?

  6. Thanks for sharing. .our nephew and his wife have a new baby girl with this sy drome…she has no thumb on one hand and three fused fingers on the other minus their finger tips…we had never heard of it before. ..
    They will be glad to hear from others…

    1. My daughter has the exact same. One finger separated by itself whilst staying in hospital for one week
      The other was separated at Royal free when my daughter was a month.
      They are able to take one of her toes an reconstruct it into a thumb when she’s 18months as she needs a thumb for balance however me and her dad don’t know if to go through with it or let her Adapt.
      Have they suggested anything to your nephew

    1. Thank you so much Raven, he is our precious gift!

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