Saturday, January 06, 2007

Ashley, a pillow angel.

Yesterday, the Globe and Mail published an article about a little girl named Ashley whose cognitive and physical development halted at 3 months of age. Incapable of sitting up on her own she has no means of independent mobility. Non-verbal and incapable of expressing herself beyond crying and smiling, and incapable of feeding herself or eating by being spoon fed (she is tube fed) this little one is totally dependent on her family and caregivers for all basic needs, stimulation, interactions, well being. Ashley cannot turn her head alone, nor can she move her body position without intervention. Her family call her their pillow angel.

When Ashley was 6 years old, after many tests were completed to try to determine the reason behind the completed halt of development only to indicate that there was no apparent reason, after accepting the reality that Ashley would never develop beyond a 3 month old, and after recognizing that she was showing signs of early onset puberty, her parents, supported by their medical team decided to find a way to enhance and protect Ashley's quality of life. They decided to try a series of procedures which would keep Ashley small. These procedures included a complete hysterectomy, removal of her breast buds and growth attenuation through extensive hormone therapy.

My initial reaction to this story came directly from my gut. It smacked of something sinister........tampering with nature...............it seemed invasively drastic and just plain wrong. The interventions decided for Ashley initially seemed self-serving and by so doing the fuzzy ethical line was crossed. Peter Pan came to mind...never growing up........ tug, tug tug at my conscience....... the story remained with me all day and night.

It also brought back many many faces of children I used to work with in a rehabilitation centre in Toronto years ago, who like Ashley were "pillow angels." It seems like a previous life now, but way back then, I developed a "Child Life" sensory stimulation program and worked directly with children who were as multi-handicapped as Ashley. Everyday for 2 years, it was just me and them figuring it out while they stayed at the rehab centre to have other needs met, often included post invasive surgery rehab. Physical growth is painful for kids like Ashley........tendons and spasms, twisted bone development are just a few complications....bed sores, excess weight etc impact the daily hygeine of these kids. Their care and quality of life was affected greatly by their size and their complete dependence on the staff at the centre and their parents. I started to remember the many conversations I had with parents who for the first 10 years of their children's lives were their primary caregivers...... after that, their children became too big physically for them to remain home. It was torturous emotionally for some of these family to make the decision to place their children in foster homes or group homes.....


I started remembering.................................. and decided to read this family's personal story...... the question I had in my mind was:

What does it feel like to be you??

An excerpt from the family's website: I highly recommend visiting the site.

The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors.

Nearly three years after we started this process, and after the treatment was published in October, 2006 by Dr. Gunther and Dr. Diekema in a medical journal1 that resulted in an extensive and worldwide coverage by the press[2, 3, 6] and a broad public discussion4, we decided to share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden “Pillow Angels”; second, to address some misconceptions about the treatment and our motives for undertaking it.

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. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.

These ethical stories generate debate and often quick judgements from people not directly involved. They tug at our values and force us to re-evaluate our way of thinking about a situation. I have no doubt this family genuinely loves and cares for their daughter. Because of the medical interventions, they will be able to continue providing for her. More importantly, Ashley will be relieved of a great deal of pain and discomfort.

What is it like to be YOU?


What would I do if I was faced with such a dilemma? Anything and everything to ensure the comfort and health of my child to the very best of my ability. No question.




13 comments:

Bar L. said...

I visited their site, she is a beautiful girl and it seems evident that she is very loved by her entire family. I agree with your last statement...I would do anything to give my son the best quality of life possible.

JP (mom) said...

Thank you for this informative and compassionate piece, Dana. I visited their site and can only imagine what it must be like to walk a mile in their shoes ... I too would have chosen to give my child the most comfort, compassionate care and help plan for the quality of her life now & in the future. Much peace, JP

paris parfait said...

It's a hard question. Nobody really knows what we'd do unless it was happening to us. Heaven help those who have to wrestle with these issues.

Rainbow dreams said...

The dilemmas some people face are (thankfully) beyond anything most of us have to contemplate. Thank you for the link to their web site. Its good to take time to imagine what their shoes feel like - often I wonder what it is like to be in other people's shoes when I watch the news, or read articles - without doubt my children's health and comfort would always come first.

sage said...

wow, you have raised a lot of interesting questions and concerns. I remember when my daughter was small, wishing that she'd never grow up, but I now know that is a wish that if came true would be terrible. I'm going to be thinking about this a bit. Here from Michele's

awareness said...

Hi Layla....the website is impressive and obviously written from the heart.
Hi Deborah..... quality of life is all that matters..... when I worked with kids like Ashley, I saw my role as someone who brought the world to them......whether it was music or colour, or a swim or a trip to the CN Tower.......a park......whatever....all part of enhancing the child's quality of life. After reading Ashley's stories, the lessons I learned in that job and the kids I had the privilege of working with all came tumbling back........wrapped up in a bow called quality of life.

Tara..... I agree......heaven help those who have to wrestle with these issues. They are brave souls entering new territory....

Hi Katie....... I thought of you when I was reading this story knowing you have worked as a nurse with families and children who are making crucial life and death decisions.......knowing you have seen their bravery and felt it too.

awareness said...

Hi Sage! Welcome........glad to offer you food for thought.....it's a mind twister, that's for sure......

Shaz said...

I to would have done what gave the most comfort to my child as a mother I would expect nothing less.
Great stuff Il be back.
Health and Peace xxx

BrotherKen said...

Oh man, I heard a bit about this on the news but never read up on it or looked at the family's website. I am going to have to now.

Regina said...

Thank you for posting about this! As a therapist that has worked with very similar children as well, and knowing relatives and friends with involved children, I always think to myself about what will happen to these children when they grow up, when their parents get too old to care for them... how family is so important to their health and well-being. I understand how families in this position can make decisions like this. I, too, would like to think that I would make the best decision for the child. God bless them...

MissMeliss said...

I can't imagine making such a choice. Ashley's lucky to have brave parents who love her. It seemed horrible and scary at first, but...it also makes sense.

Sunny said...

I have a few reservations about this whole process. I would hope that I would want to do what is best for my child but then again who am I to say what is best...a bit like playing God I would think. It is a very hard decision to make; one I don't think I could have made easily just as I am sure these parents must have agonized over this very question before finalizing the decision.
Not sure if I agree or disagree but I do know that these are parents who obviously love their child no matter what decision they've made.

awareness said...

Hi everyone.......

It is such an ethical dilemma, one that hopefully none of us ever have to face. It's one of those stories that really does force me to question whether or not I have the right to judge others. As much as I try to ask and answer......"What is it like to be you..." it is only ever going to be an educated guess at best.