Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

I think the oestrogen treatment that would restrict her growth accelerated her puberty. We accept that children have their growth stimulated or restricted quite frequently for purely social reasons (in order to prevent them being socially unacceptably short or tall) it is common practise to give severely mentally handicapped women regular contraceptive injections. I think this is more extreme, but not dissimilar morally.

It's so obvious how much they love their child.

To have to be so desperate to be able to continue caring for her as long as you can. To hang on like that.

To tell her 'I love you' and show it in thousands of way, and know she'll never say it back, can never say it back.

That is true heartbreak if ever there was.

Medicine is progressing at such a fast rate. Is there a chance that her prognosis will improve dramatically with stem cell treatment etc? If so, a hysterectomy, hormone treatment etc. may have ruined her life. Just a thought.

Not likely in her case, bauble.

Really not likely.

Even should that happen, who would pay for it?

Not free in the US.

Or anywhere.

there was a pediatrician on 5 live earlier today and he said that it is actually quite common for children with such profound disabilities to experience early puberty, I didn't hear all that he said, but it seems that it has something to do with the fact that the brain is damaged.

She isn't going to get better. I think they are more likely to be able to regrow arms and legs in amputees than to build a whole new brain.

Especially w/the huge lobby against stem cell treatment from the religious right in the US.

No chance Bauble.

Saying her development is like that of a 3 month baby isn't the same as having a 3 month baby, with potential to develop. It's a measure of what's she's capable of doing. What they mean is that she can distinguish light from dark, she can follow an object in so much of an arc (can't remember the 3 month one- is it 45 degrees or 180??). It means she can't feed herself, is doubly incontinent, can't understand anything at all, can't sit, can't move her head purposely, can't support her own head.

I understand fully.

But to surgically mulilate another body for reasons of conveniece is clearly unethical.

Doesnt the poor child deserve dignity ?

A person who can't speak for themselves has now undergone invasive surgery which is clearly a voilation of her human rights.

In the 21st century we can't go around sterilising people, removing their breasts and stunting their growth for reasons of convenience. I can see the parental motive it is nontheless a hideous act to perform.

How far do we travel down this road ? It sets a dangerous precedent.

There's other moral issues to address...

What if at some stage a cure for her illness is found ? unlikely, I admit but not impossible either

What if she died during surgery ?

How do we know deliberately disturbing her hormone balance to stunt her growth wasnt in some way painful or distressing to her ? She cant communicate that fact remember.

Who knows what the future held for her ? She's now been denied to acheive adult (physical) maturity for convenience.

What happens when her parents die ? who looks after her then ? (her brother and sister maybe) how are they going to view looking after an adult of a similar age who has been trapped in the body of a 9yr old ? It maybe they will not share their parents stand point.

You simply cant go around tampering with otherwise healthy bodies just to make things easier.

Sorry. Dim of me.

That was my only question when I read about this family. Otherwise, yes, they are her family. They are the ones who are caring for her, and doing very well by the sounds of it.

Yes, you are right. She did show signs of natural puberty at six. The treatment would have made that worse.

But shunting her off to people who don't love her, isn't degrading.

She's not an adult trapped in a 9 year olds body. She would be a 3 month old trapped in an adult body.

'But to surgically mulilate another body for reasons of conveniece is clearly unethical.

Doesnt the poor child deserve dignity ?'

Do you just NOT get it?!

The people who love her most will have to give her away to strangers VERY soon if they hadn't done what they did.

There is NO NHS in the US, and the parents don't qualify for state help.

Ever been to a nursing home in the US? B/c I have, unfortunately.

Convenience? LOL!

A cure?

Have you googled her condition??

When was the last time you were the primary caregiver for your child w/extreme and profound disability?

Day by day, 24 hours a day.

B/c you couldn't afford respite care and didn't qualify for state help to get some.

Children have height altering treatment all the time. The treatment was invented for Ashley. The family is absolutely emphatic that the treatment was all for Ashley's sake and for her dignity. Why don't you at least read their words before you criticise.

I would say leading your life in the care of social services is a violation of human rights.

If she outlives her parents (the vast majority of children this profoundly disabled do not) I doubt very much that her siblings will look after her tbh. It requires parental love to do it and deal with it and cope with it. If her siblings do take her on they will be very special indeed (and would effectively have to give up any life of their own).

toastee, I presume she can communicate distress. My abbies certainly could at 3 months. She wouldn't get the cause obv, but I presume she can cry etc

If these parents really put their own convenience above the needs of their child, they'd have turned her over to state custody as soon as they found out she was disabled.

expat - it's the same here- the thought of ds1 in the 24 hour care he will ultimately require makes me shudder. I dread dying and leaving him to that.

Was a bit shocked when I heard the tabloid headlines, but having read into it a bit more, I do have to ask myself "what would I do in the same situation?", and on the basis that her quality of life is quite possibly improved, her parents who obviously love her are given the chance to have a life with their daughter, and doctors who are far better trained than I am to comment, felt it within reason, I'm finding the arguments against diminishing somewhat......

Exactly expat- it's love that makes that so very difficult to do.

I teach children with severe and complex medical needs and disabilties and cannot begin to empathise with the family as I have no idea what it must be like to parent a child with severe disabilities.
It was clearly a difficult but I think right decision for them. I am just gladdened to see as someone earlier mentioned that the parents were listened to and were able to have this happen to their daughter.
toastess- your objections show your ignorance of what it is like to have a child with severe disabilties.

Yes, she cries when uncomfortable or in pain. The parents' blog makes that clear. In fact, they say:
A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley?s quality of life. Ashley?s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The ?Ashley Treatment? goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.

Unlike what most people thought, the decision to pursue the ?Ashley Treatment? was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.

Ashley?s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby?s attention, entertaining the baby. Likewise, Ashley has all of a baby?s needs, including being entertained and engaged, and she calms at the sounds of family voices.

I can see there are medical and ethical issues here. Of course there are. But to personally criticise the only people in the world who love and care for this girl every day of their lives seems really unpleasant to me.

Possibly very controversial, and I apologise in advance if I offend anyone, (and I know they are very different situations) BUT I wonder how the opinions differ between this and baby Charlotte......

northercules- do you teach in an SLD/PMLD school? I've learned so much (from the PMLD students) since ds1 started going to one.