Commentary
Ashley Parents Not Wrong
Treatment looks different when considering a life of relentless
medical interventions
by Jodie Johns
As a mother of a child with
a severe disability, I thought others might be interested in my
thoughts on the Ashley Treatment.
First, I am sad about the criticisms the parents have received. They merely want
others to know that there are options for a child with severe disabilities.
I agree with the doctor from one of the ethics boards, who stated that this is
a sad case because while our society needs to be able to take care of people
like this little girl when she grows up, such care is not what our society deems
important. There is not enough funding for this level of care. The AARP is
not big enough for this type of care...although they try. The complex care needed
by a large-body person, whether in a nursing home, foster care or group home,
is more risky than that required for someone who is small.
Second, while most of “Joe Public” strongly oppose these procedures,
they do not realize the relentlessness of life for the child—or
the caregiver. When you talk about breast and uterine removal and stunting
someone’s
growth, these may seem like horrifying and violent medical procedures. Surgery,
as you and I both know, is terribly risky under the best circumstances.
However, when you consider what this child has already been through... I wonder
are these procedures really wrong?
I don’t know Ashley, but I know my son, who is very much like
this child physically. Here is a list of some of the medical interventions
my child and physically similar children endure throughout their
childhood:
• 8 dental surgeries
(a simple annual teeth cleaning requires anesthesia and a hospital
facility)
• 1 g-tube placement
• 11 botox and phenol injection surgeries (every 6-12 months for
flexibility and contractures)
• 3 eye surgeries
• 600 hours of physical therapy
• 600 hours of occupational therapy
• 672 hours of speech therapy
• $5000 for an Augmentative Communication Device
• 4 wheelchairs, each requiring eight hours of adjusting
every six months for growth
• 5 standers (30 minutes 2 times per day...requires two persons
for this transition)
• 4 gait trainers (same as above)
• 2 bath chairs
• 31 hours a day of care and over $50,000/yr of personal
direct care and nursing care.
• $20,000-40,000 in prescription drugs
• 4-6 hospitalizations per year
• Countless diapers, inserts, tubing, syringes, chux pads,
g-tube food
The list will only get longer as the child grows.
Tell Joe Public about the painful surgery that puts a steel rod in
the back of a 9 year old. Ask them how you look when your legs grow
but your torso can’t? The child can never bend over or twist
side to side, but sits up like a champ!! And since sitting straight
is socially acceptable, everyone comments on how great the kid looks!
Tell them about heel-cord lengthening and botox in the sphincter?
My son has wonderful caregivers. I consider myself very fortunate
because I can pay a fair wage for this difficult work. They adore
my son. They love us like family and we feel the same. Yet,
they would NEVER want to do this without me. They could NEVER
look after Nathaniel like I do. They are concerned for my health
as much as my son’s, because they know he will not make it
without me. I am 43 years old. I have 30 extra lbs, I am sleep deprived
and I have a bad neck and back from all the lifting. I pray for sleep
so I can have enough energy to workout so I can lift weights and
carry Nathaniel for as long as I possibly can.
My son is 4’6" and 62 lbs. My saddest day will be
the day I cannot lift him in my arms to move him to a more comfortable
position. This morning, at 3:00 a.m., I moved him nine
times from bed to seat to floor and back. One day I will not be able
to do this...who will? And how will it compromise his health?
If he lives in any kind of assisted living facility,
the care will be minimal, because the patient-to-caregiver
ratio is high. So, he will get more bed sores, skin breakdown
and muscle deterioration, which will inevitably cause infection
and often times pneu-monia, contractures, painful
arthritis and greater respiratory diseases that will
not be remedied through physical movement and standing devices,
but through medicines and surgery. He risks broken bones from difficult
transfers and skin infections from simple things like ingrown hair & nails.
Sweat glands and hair growth under arms and in the pubic
area often cause infection and breakdown of the skin due to improper
hygiene from caregivers who cannot get the person in the right
position to clean and dry.
The question is... How will Ashley’s three medical interventions compromise
her health, quality of life, and level of care? In light of what
I just outlined, does it seem so inhuman and undignified?
So why don’t we talk publicly about putting our children
through these procedures? Because the public will say, “These
children are why our healthcare costs are so high.” And, “Why
don’t you just let them die...their lives are undignified
and without purpose?” One might argue that our children are
the ones on the front lines keeping medicine on the cutting edge
to help the greater good.
The secret our children
possess, without words, is that they are the gift to the giver. They serve us more than we can ever
serve them. They teach us to reach for a deeper purpose in our
lives. We then have a greater love, tolerance and understanding
for others and the world around us. Unfortunately, we live in a world
that won’t get it, because these are gifts that cannot
be translated into dollars and cents.
Lastly, it’s important to note that the Pillow Angel is loved.
The procedures may be a compromise to Ashley’s health,
but it is a difficult decision made by the parents who must consider
the trade-off with the countless procedures mentioned above. As long
as her parents are with her, her chances for a loving, quality life
are far better than any other options available in this selfish,
self-centered age. Healthcare institutions cannot and will not protect
her. Maybe one day they will.
I pray for a brighter future for all of us. ![]()
