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Guest post: Our “killer” surgery decision for our son

March 13, 2013 at 22:57

Mama Lewis

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Jamie Robinson writes the blog One Man and One Wee Bairn and also shares space with me on the BabyCentre Blog UK where he is the only best daddy blogger on the site! I’ve really enjoyed his posts there and was thrilled when he agreed to share his son’s story on Mama Lewis.

Jamie and his wife had a “killer” decision to make: should his son have surgery or not? Having been in similar position – May will undergo major hip surgery later this year – I know how heartbreaking it is contemplate your child being wheeled off into theatre. The decision he and his wife made was a brave one.

The word ‘disability’ changed dramatically for me the day my son was born. There was no sign in the scans we had before his birth that he would be born with Symbrachydactyly. This is generally characterised by a malformation of the fingers, hand or arm of the foetus as it grows in the womb. It usually affects between 1 in 30,000 and 1 in 40,000 people and there is no clear reason why it occurs.

For my son the malformation occurs on his right hand. He has a full thumb, a quarter of an index, no middle or ring and half a pinkie. Within hours of his birth he had been in Special Care Baby Unit, had an x-ray which traumatised us more than him and we had spoken to a plastic surgeon about our options. My wife and I sat dazed and slightly confused by what we were being told. A 36 hour labour had taken its toll on us and the experience wasn’t quite what we had had in mind for the first day with our first child.

This Friday we have what I hope is our last appointment with the plastic surgeon. Surgery, involving replacing fingers with toes was available to us but chose not go forward with it. My son is a very strong walker even at 15 months old and we felt that putting him through major surgery at his age wasn’t appropriate.
It was a killer decision for us and we suddenly had to think a long way into the future about what he would think of us for the decision we had made. I hope when he is older that he agrees that surgery for aesthetic reasons would have been wrong.

So far his hand hasn’t stopped him from doing the things he wants to do and he’s even adapted it to eat things as small as raisins. The problems however come with us and the futures we are inventing in our heads. Worries about school, friends and bullying sometimes linger in our minds but the only healthy thing to do is take it one stage at a time.

What do you think about Jamie and his wife’s decision?

Do you have a story you want to share on Mama Lewis? Email me at contact@stacielewis.com for details on how to do it!

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6 Comments

  1. Jenny March 13, 2013 Reply

    I agree with them. He is perfect as he is. I love strong good parents!

    • Mama Lewis March 13, 2013 Reply

      It must have been a very difficult decision for them to make. And, you're right - he is perfect (and adorable!)

  2. Rv March 17, 2013 Reply

    I think they made a good decision. If he is unhappy with his hand and it's function later in life, then he can always revisit the option of surgery and who knows what advancements may have been made by then? Also they've no idea of what he might grow up to be- what if he's brilliant at football? I imagine 10 toes is more helpful there than "5 and a more regular looking hand".

    • Mama Lewis March 18, 2013 Reply

      Good point! What if he is brilliant at football? There is a great perspective here that sometimes doctors can miss.

      • Rv March 21, 2013 Reply

        I am a doctor! But having spent a lot of time in hospitals I'm a big fan of not spending a lot of time in hospital as a patient... Seen a lot of "interventions" go very wrong so I think it is important to only risk it for important things.

        Anyone who considers surgery to help their child "fit in" cosmetically doesn't consider that other children are both inherently cruel and not rational. They may mock someone for an unusual looking hand or they may decide to mock the same child for the way they pronunce a certain word or because they get a funny look on their face when they are concentrating or they have the wrong sort of clothes. Or if this child did have the surgery they might end up mocking him and claiming his hand smells because it's made from his foot. Children are just like that. Everyone will have something that makes them vulnerable to being teased growing up. And if it does become a problem for the child, there are very few surgeries that can't be done later in life, when the child has a say in things.

        Hand deformities don't have to hold you back at all in life, whatever the profession. There was a guy who graduated from medical school in my year who had ectrodactyly of his right hand (left hand unaffected) and it never held him back with any of the practical procedures.

        • Mama Lewis March 22, 2013 Reply

          So great hearing from a doctor's perspective! Thanks! And, as a teacher, I know also that if kids want to find something to tease a kid about they will. That's a terrible truth about growing up.

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