Hysterectomy and Mastectomy for a disabled child?

This afternoon I read an article about a child whose parents had elected to keep her a child, by surgery and hormone treatment, in order to make it easier to keep her at home and care for her.

http://www.independent.co.uk/news/world/americas/parents-who-froze-girl-in-time-defend-their-actions-430852.html?fb_action_ids=3574626933812&fb_action_types=news.reads&fb_source=other_multiline#access_token=AAADWQ6323IoBAFXqZCQHcRdnCkeZAvt4nuPeA7rGZBjE0F6DrENRpmlI

My first reaction was of horror that they could think of doing this to their daughter. She is severely disabled, but what they were doing was removing parts of her body that were healthy, her uterus and the developing breast buds. By giving her oestrogen, they can prevent puberty developing.

I have cared for severely disabled people. I have witnessed what appeared to be PMS in women who had no understanding of what was happening to them. I have seen a woman cry with what I thought was probably period pain, but I had no way of really knowing, because she had no speech, and no way of communicating her distress beyond a greyish pallor and silent tears.

Certainly, for her, not having periods would have been of great benefit. For us, as carers, it would have made no difference to the way we dealt with her personal care. I don’t believe that the parents in the article arranged a hysterectomy in order to have to avoid dealing with periods.

I do have a question in my mind about the fact that their reasons seem to be that they feel that she would be too difficult to handle were she to reach her projected height of 5’6″. Yes, of course she would be more difficult if she was adult size, but these days, with ceiling hoists and other equipment designed for the care of disabled people, it really isn’t that difficult. Certainly the people I worked with had a full life, going out more often than I did!  We took them to cinemas, theatres, restaurants, pubs, bowling, shopping. Once hoisted into their wheelchairs, their physical size made no difference to where we could take them and what they could see or do.

The parents concerned in the article are the ones dealing with the problems though. They are the ones who know their child. They also are willing to continue looking after her, something that is very difficult. They can never switch off and forget her, as I could when I finished my shifts. I’m sure there are lots of things that were not said in the article, things that might have swayed us one way or the other. I think what I’m trying to say is that I’m willing to believe that what they did was the right thing for them and for their child.

I haven’t read any of the responses to the article, but I’d be surprised if there weren’t some people protesting about this child’s human rights. Of course, she has rights. She has the right to receive the very best care available. She has the right to choice, as far as she is able to make a choice. That is probably no more than a flicker in her eyes when given the chance to smell two different shower gels, or what could be a random glance at two cups, when being given the choice of milk or juice.

Unfortunately her rights are limited by her capabilities. She doesn’t have the capability of making the huge choices in her life. These have to be made for her by her parents, as they did when they signed the consent forms for her operations. The danger of the lobby opposed to her parents is that if the parental right to decide for her is taken away, and they have to approach a court for permission to do something that they feel is necessary, she could suffer in the future, whilst waiting for wheels that can turn very slowly because of red tape.

In the end, I think I come down on the side of the people who know, the primary care givers, and that is the parents in this case. I’d feel very differently if the child was being cared for by others, in a home of some sort. Then I would be very opposed to the parents having the choice. I think the point is the only people who really know what is right for this girl, are her family, who look after her on a daily basis. They have made a decision based on their love for their child, and their decision to care for her at home. I think their decision has to be right for them all, and they are the only ones who really are qualified to know.

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