Treatment looks different when considering a life of relentless medical interventions

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.