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.