I did do some research and what I found was a bit scary. Split hands and feet involving four limbs is seen in 1:90000 births. Often other nuisance type problems go with this...dry skin, bad teeth, and problems with tear glands. Then I stopped reading. My husband was very sure that this child was to be our, so I could relax knowing that it wasn't just my overactive mother heart. Or worse "how young does she think she is?" "does she think they can save them all?"
I met her, we came home and I've been talking about her ever since. She's an amazing little girl...but that's not what this post is about.
Ben has to do a short speech at school on a medical subject of his choice. So he picked ectrodactyly. As he is doing his research I picked up on something that had bugged me before when I was doing my own research....the pictures of the tiny little babies with cleft hands and feet...why did they look like that? DUH mom! those are aborted babies.
OK, I told myself not to jump to conclusions, did people really abort their babies 'just' because they are missing fingers and toes?!
Then I joined a FB group for people who are living with ectrodactyly or are pregnant with children diagnosed with ectrodactyly and I found my answer....Yes, abortion is advised when people are carrying children with ectrodactyly.
Quote of the month: "Why can't you be like other moms and help us with our homework?" (this from an A, B student)
" I thought when I'm the oldest I would get to pick the easy jobs" (this wasn't the father of the clan speaking)
I cannot believe people abort for such cosmetic reasons, or abort at all. :(
ReplyDeleteShe is beautiful!
I was contacted by a mother expecting a child with my child's genetic abnormality. She was trying to decide if she was going to abort the child. People who casually know my child, have no idea there is anything 'wrong' with my child. It was one of the hardest emails I ever wrote, it put such a weight on my heart. I would never abort a child for any reason (except if my life was going to be lost and consequently the child's too, then I would consider inducing), let alone my child's genetic problem (which is 'minor' for the most part, and many people have no symptoms). I prayed very hard over the correct words, they were some of my most fervent prayers of my life. The child is now 2.
ReplyDeleteWhen we were researching Arthrogryposis I was hoping to find info and blogs. The first blog I found was all about a person who aborted because she didn't think her son would have a life. :(
ReplyDeleteErika is loving and kind and confident and VERY MUCH has a life!
I still feel sad for that family. They have no idea what a precious gift they decided should not be.
These decisions are not for us to make.
Interesting...I haven't thought of asking the doctor's what Natalie's chances are of passing her limb abnormality onto children of her own...would women abort a child with a short arm and not thumb if they saw that on ultrasound? her birthmother did keep her for a couple of months before leaving her in a hospital in Beijing...wonder if she tried to hide the deformity. interesting things to ponder
ReplyDeletei must come meet her soon! let me know when you have time for a visit (and we are well around here!)
Hi!
ReplyDeleteI'm French. I live in Toulouse. I'm 48 years old. And I have ectrodactylie too. Hands and feet like your daughter ! I'm the mother of 4 children and none of them have ectrodactylie. All of them (3 boys and 1 girl) are "normal".
I want to tell you that, for you daughter. May be we can reproduce the malformation (50/50) may be not...)
And my mother ever told me that if echographie existed in 1965... I wasn't born...
But how to explain, how we can live superbly !!!
Have a good way of life !
Isabelle RICARD