Friday, October 5, 2012

31 for 21: Thoughts from a Mom of a 31 year old Girl with Down Syndrome

I received an email a couple weeks ago from a mother who has a daughter with Down syndrome who is 31 years old.

While I do not advocate the use of tongue surgery and I believe it is unnecessary, there may be a time that it is necessary for a particular child. I thought it would be nice to share this mother's story, because it has a neat ending. I will address in other blog posts more about why I feel tongue surgery is unnecessary the majority of the time.

I am a little slow on the blogging but I do have a 31 year old DS daughter and feel good about where we are with her. When she was just three years old we had a tongue reduction surgery done. The surgery was shown on PBS; from England, done on a 12 year old DS boy. I went to a plastic surgeon in Cleveland, Bahman Guyuron, and asked if he could do the surgery. He had never done this but felt it was certainly something that could be beneficial. His words: Imagine if you bite your tongue and it is larger and how your words are slurred. Think about having an extra inch of tongue in your mouth; how would you sound? His speciality was cranial facial surgery; I saw him on a morning show in Cleveland on TV while nursing my new DS baby.

    The reduction for Carrie that time was a pie-shaped wedge cut at the end of her tongue. It was stitched top and bottom. It was done over spring break and she was in the hospital for three days. (I stayed with her and the third day she was running up and down the halls.) The tongue heals quickly and by the time she went back to her preschool at the local school for special needs children she was doing well. I received a note from the speech therapist that week expressing her excitement that Carrie was making so many new sounds.

    Fast forward--Carrie attended regular school but always in a special ed class with some inclusion. She had another tongue surgery at age thirteen as her tongue had become large again. The doctor opted for the same surgery at the end of the tongue but I think he also trimmed the sides as well. As any teenager, this was a major event for Carrie but she healed well.

    Today she works daily at a sheltered workshop. She reads to the little children in an early intervention class once per week and in the same preschool class she attended once a week as well. The children love her! They are very attentive to her reading and I am pleased that she is doing something of value for the children and the parents of those youngsters. It is a win-win for everyone!

    I am saddened that Carrie is the only child I know (with DS) that has had the tongue reduction surgery. Dr. Guyuron has done many more surgeries and spoke at a meeting of the National Down Syndrome Congress some years ago. Carrie is very social and is able to be more social because of her ability to communicate.

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Cindy said...

This post really interested me. That surgery was suggested to us when Beth was growing up. (Beth is 28) We didn't opt for the surgery, but Beth has become quiet and very shy. She has a difficult time forming words and therefore has chosen to talk as little as possible. I sometimes wonder if the surgery would have been beneficial for her.

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