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Should Ashley stay a child for ever?

I count my blessings in having two healthy sons and cannot imagine the agony of being the parent of Ashley X, having to make those tortuous decisions about her future – followed by public condemnation.

Ashley, who has a severe brain impairment, was given radical treatment three years ago at the age of six to stunt her growth, she will remain a child for ever.

She had started to display signs of puberty and was expected to have a large chest. Following consent from the ethics committee at Seattle Children’s Hospital, Ashley, who has static encephalopathy, was steralised and her breast glands were removed.

Her parents, who have two other children, believe this will improve her quality of life, that by remaining a child, she will avoid suffering conditions like bed sores and pneumonia, as well as avoiding fibrocystic growth and breath cancer, and protect her from the risk of potential sexual abuse.

Ashley’s doctors believe that the controversial treatment has removed one of the major obstacles to family care, possibly extending the time that parents with the ability, resources and inclination to care for their child at home might be able to do so.

However, critics accused doctors and the parents of creating a 21st century Frankenstein’s monster, of maiming a child for the sake of convenience. They described it as “offensive, if not perverse” and “truly a milestone in our convenience -minded society”.

Ashley’s father, while remaining anonymous, posted a 9,000 world blog entry at 11pm on New Year’s Day to justify his decision saying:

“Some question how God might view this treatment. The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal . . . to maximise her quality of life.”

I believe it takes courage for parents to make these far reaching decisions and am confident they had their daughter’s best interests at heart. To know that your child will never grow into a woman must be devastating for them, it must have been a momentous decision. I believe it is this aspect that critics find so uncomfortable, to know that nature can be controlled this way. It is certainly macabre to know she has been frozen in time. Can you imagine your child never growing up?

I’m sure it’s not a choice any of us would have wanted to make, it was a courageous one made by the parents for their reasons which was backed by a hospital ethics committee. We should support them. How would you have felt in their shoes? Do you feel they made their choice out of convenience, or for the child’s best interest?

Now here’s a challenge, can anyone locate the father’s blog so I can post a comment?

Update: Thanks to Heather Yaxley and Louise for the prompt link to Ashley’s moving story and pics via her parent’s blog.

Update: 5 January, 2206: I am quoted by USA Today!


21 Comments

  1. Has anyone tried a good treatment ? maybe she could have a more normal life.canadian pharmacy drug

  2. I feel real pity for her, poor girl, what can we do to help her ? i know a few warm words really help so i will say that whenever you need to speak with us just ask.online medications

  3. I don’t know what’s happening to me, i get too emotional about these things. I looked at Ashley’s picture and it’s breaking my heart. Every child should have the same chances. Really sad indeed.Narcon Vista Bay

  4. There is also a link with an interesting discussion following here: http://brownfemipower.com/?p=790#more-790

  5. Hi Ellee,

    Not being an expert on medical matters I am not in the position to voice a strong opinion, and I am sure that this could not have been easy for the parents. In my view this raises the issues of the cost needed to care for the disabled, and I feel was there more funding for care such a horrible decision may not be necessary, especially as it is not impossible that a cure may develop. But I’m not in a position to judge the parents.

  6. Bennie and Shani, Thank you for sharing your personal stories with us. Shani, what terrible decisions you too had to face, I hope Toby continues to make good progress. I wish you and Bennie and your families every success for the future.

  7. We have had to make some heartrending decisions in the past year – one of them being to veto part of our son’s brain being removed after an accident, and the other to delay the replacement of his skull on the grounds that he wasn’t fit enough for the surgery.

    We had to take some quite agressive steps to force consultants to listen to us, two having already given up on our son having any chance of life.

    Today – a year later, he is in rehab – the skull replacement was carried out a year after the initial incident and thankfully he lived through it.. it was conceded we were right to have pressed for postponement.

    Toby is 17 and is not a cabbage as predicted, in fact he can type and communicate – getting stronger every day.

    I say the parents should receive our support and respect, not to mention our prayers – everybody else who has an opinion – including the press – should stop for one minute and think about what they and young Ashley are going through. It is not the media’s life it is theirs…

    Best wishes Shani

  8. Ellee,

    I was directed to your site via The Curmudgeon. As a parent of a child with multiple disabilities I appreciate your comments in regards to Ashley’s family. Nancy Grace of CNN enraged me last night in her disgraceful reporting of Ashley’s story. To debate the ethics of this familiy’s decision to seek the best interest for their beloved child is beyond my imagination. I have the link to that transcript on my blog. Thatks again for your thoughs!

  9. Happy New Year Ellee :o)

    I’d hate to be in that situation. One would think the parents did not come to this decision quickly, that they took their time to make such a decision. I don’t think any of us has the right to judge until we’re placed in a similar situation.

  10. I dont think anyone really knows what they would do. Thinking about what you would do is far different from actually having to decide what to do……at the end of the day there is no right or wrong choice, just what works best for them as a family.

  11. No. Need I say more?

    p.s happy (belated) new year!

  12. There are no easy answers here, Ellee. One would dearly like to have a clear solution, but there ia a no-win situation.

  13. I am with James. A decision you would not wish on your enemies.

  14. I can’t inagine being in the parents’ position and I don’t think we should judge them. I agree they have been brave and had their daughter’s interests at heart. The only thing that worries me is who is to say what new discoveries will be made in medical science during Ashley’s life time? A treatment for her brain condition could be found. But we have to deal with the world as it is and not as we would wish it to be.

  15. I have absolutely no clue on this ethical issue. It would seem to be something a woman’s opinion would count a lot on.

  16. D. Smith,I think the doctors and parents had a pretty clear idea which way Ashley’s future was heading, else they wouldn’t have carried out such drastic operations. They have probably broken new ground here, I don’t know if it is a first. They have to live with that decision for the rest of their lives, it could pave the way for others to follow if it is deemed a success.

    I do agree about doctors being proven wrong in the past, I wouldn’t give up either on someone I loved.

  17. D. Smith

    “The road to hell is paved with good intentions” (Oscar Wilde)

  18. D. Smith

    Doctors who often tell patients that they have only a certain number of years to live or that they will never be able to communicate or that they will never walk, the list of “medical prophesies” is endless but patients have proved the “almighty scientists” wrong MANY many times.

    I don’t doubt that the doctors have had a profound influence on the decision made by these parents.

    The child is just nine years of age and no one can say how or when or if ever Ashley will progress in some way. Human-beings have unique ways of surprising us even when life may appear to be astray.

  19. Louise, Thanks for the comment and link too, it was emailed to me at the same time by Heather Yaxley. The prompt response was much appreciated.

  20. Happy New Year Ellee.

    I agree – it’s a choice I would never would want to make, but I think they have made a brave choice and deserve support rather than criticism.

    http://ashleytreatment.spaces.live.com/blog/

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