Amelia’s Story

I had never heard of ABS until I read the article on CNN website. My daughter Amelia “Millie” was born on July 8th, 2013. The doctor came over to us and told us that on her left hand she had 2 fingers that were smaller and on her left foot 3 toes that were smaller. They were also concerned because she had a bald spot on her head. The pediatrician said everything seemed normal with our daughter otherwise.

Fast forward to 2 months later at her 2 month check-up. The doctor was concerned because she hadn’t grown hair in her bald spot. He first told us he was worried it could be Adams-Oliver Syndrome and that we would need to get some tests done to make sure her kidneys and heart were ok. All her tests came back normal that October so he referred us to a geneticist. We had to do some more blood work and the geneticist referred us to a Pediatric Orthopedic Specialist for her hands and feet. We learned that on Millie’s left foot she didn’t really have any “normal” toes. They were all smaller than normal but the only noticeable ones were the first 3 toes. He said she should walk fine, the only issue he could see was that she wouldn’t be able to wear flip flops in the summer. The hand specialist was a little concerned with her hand because her middle finger is smaller and it is curved towards the index finger. They were worried that it might affect her writing.

So far all of Millie’s blood work has come back normal. There was a slight abnormality in one of her genes on one of the chromosomes but the geneticist said there wasn’t a cause for concern about it. We haven’t officially gotten the diagnosis yet on the ABS. We see the geneticist again in January where we are hoping to get a more clear answer, but when I asked him about ABS he said it was a possibilty that had always been considered, he just wanted to rule out genetic issues first.

Millie is a happy and healthy 15 month old. She hasn’t started walking on her own, but we feel it has nothing to do with her small toes, and our pediatrician agrees. She has full use of all her fingers and does well with the small fingers as well.

2 thoughts on “Amelia’s Story

  1. Thanks for sharing Millie’s story. It’s great that the CNN article has helped you find out about ABS. Keep us posted about the diagnosis.

  2. Good information. I was born in 1943 with a thumb and 2 fingers on rt hand and only 4 toes on rt foot plus rt leg is now 2.5″ shorter than left; I did have surgery at age of 11 to stop left leg from growing hoping right one would catch up. I have a built up right shoe and curvature of spine is pronounced somewhat. All is well though as I am able to walk Ok and do fly single engine planes.

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