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Friday, January 22, 2010

Baby Isaiah and the Value of Human Life

Readers will recall I that wrote about Baby RB in Britain and a somewhat similar case has arisen in Alberta, Canada. Baby Isaiah James May was born last October and suffered severe oxygen deprivation. After a complicated and prolonged birth the baby was placed on a ventilator at Rocky Mountain Hospital and transferred to Alberta Health Services (AHS) Stollery Children’s Hospital. On January 13 the parents received a letter from the AHS that stated their child’s doctors thought everything had been done to help Baby Isaiah. In their estimation “the diagnosis is unchanged: your son suffered severe anoxic brain injury at birth and has irreversible brain damage. There is no hope of recovery”. The letter went on to state that “it is with sadness that we are advising you that your treatment team will discontinue mechanical ventilation support to Isaiah after 2p.m. Wednesday, January 20, 2010”.

I cannot imagine what Baby Isaiah’s parents, Isaac and Rebecka May have been through since their son was born. But even by the most cold hardened standards the letter quoted that I found on the website is hard to read much less accept. Like Baby RB, I have no idea what is in the best interests of Baby Isaiah. But Baby Isaiah’s parents do not want their child to be disconnected from his ventilator. The Mays and their lawyer want the hospital to delay their decision for 90 days. AHS and the Mays went to court in part because the AHS told the court they were willing to wait 30 days. Madame Justice Michelle Crighton is considering the position of the parents and AHS. She has stated that she needs time to consider the arguments presented to her. In short, the court will decide Baby Isaiah’s fate.

I find the case of Baby RB and Baby Isaiah disturbing. I cannot fathom how the parents and doctors cannot find common ground and work together and as a team decide what is in the best interests of the child. Such a divide between parents and doctors makes me wonder if I was lucky to be sick at a time when life and death decisions such as those my parents faced with me were clear cut. As medicine has advanced people are living longer as are infants born with profound physical and cognitive deficits. But what sort of life are people leading? And more to the point, how does society value those humans that have profound physical and or cognitive deficits? If I have learned one thing in my life it is that individuals with a disability life is subject to debate. That is, doctors, nurses, administrators, and people like Peter Singer feel free to openly question the quality of life for those with a physical or cognitive deficit. So called normal people, adults and children alike, are a class apart. The people with a disability that are at the greatest risk include infants born with profound physical and cognitive deficits and genetic conditions such as Trisomy 13 among others. Based on my reading, particularly the experiences of parents whose children are born with profound and complex disabilities, parents are given the illusion of choice and informed consent. The information they get from the doctors charged with caring for their children is heavily edited if not directly misleading. The underlying assumption made is their children are not fully human and as such do not have the same rights as others.

Two parental experiences in this regard have haunted me recently. First, the experience of Barbara Farlow as expressed in “Misgivings” published in the Hastings Center Report (September/October 2009) and Sam Sansalone’s story of how he fought to save the life of his daughter, Katya, who was born with Trisomy 13. For more about Sam Sansalone’s experiences see What Sorts of People and the Advisory Committee of Family to Family Connections at Alberta Children’s Hospital. Sansalones’s experiences should cause each and ever person to think long and hard about medical care, medical ethics, and what it means to be human. Sansalone’s does not mince words: He maintains that “in Canada profoundly disabled kids are routinely—and intentionally—not treated with life saving intervention”. Based on his experience, he thinks that when his daughter was born eight years ago “the clear mandate, at least at that time, was that you don’t save these disabled children’s lives. You allow them to die—even though the needed interventions are exactly the same as would routinely and unquestionably be given to quote unquote normal children” I disagree with just one aspect of Sansalone’s assessment of the situation. The exact same thing takes place in the United States. Surely Barbara Farlow’s experience with her daughter Annie is evidence of this. Farlow wrote about her experience having a child with Trisomy 13. She knew her decision to have her baby and knowing about her condition was not common. She was well aware of the fact most children born with Trisomy 13 live a very short life, just hours in some cases. But when her daughter was born she did not have the expected brain defect or cardiac condition that was anticipated. She was not blind or deaf and her major organs were structurally sound. She recalled being shocked and delighted until a medical fellow asked her “Do you really want to treat this child? She’s going to have disabilities”. Farlow’s daughter died some time later and she had a “nagging sense” that the events at the end of her life were illogical. Over the next two years what she learned was shocking—that her daughter not only needlessly suffered before she died but her death was most likely preventable. Imagine her dismay when she read the coroner’s report that declared the events of her daughter’s final admission to the hospital “do not represent appropriate forms of care”.

Focus here: “do not represent appropriate forms of care”. Are infants such as those with Trisomy 13 out of the norm? Yes, but this does not mean they are not human. It does not mean they should be allowed to die and experience a “slow code blue” as Farlow’s child did on the final day of her life. This phrase “do not represent appropriate forms of care” does not begin nor does it end with children with Trisomy 13. The lack of appropriate care starts at birth for some, at the onset of a given disability later in life for others such as myself. But what this phrase reveals is the lack of appropriate care is a social not a medical failure. I contend the experience of Sansalone and Farlow is akin to the ripple effect on a pond and they are toward the center. People like me are farther away from the center but affected nonetheless. All human life has value and I for one cherish my autonomy. Yet I am not always autonomous, fully independent, because I am paralyzed. This rarely bothers me and I have learned there is nothing wrong with asking for help from time to time. What does keep me awake at night is the knowledge that others consider my existence a tragedy or that I am living proof of the limits of medical science. What this narrative overlooks is quite simple: I remain a human being.

Wednesday, January 20, 2010

Making Progress Two Kids at a Time

Last weekend I went skiing with my son and seven of his friends. Yikes, eight teenagers are a handful! The boys and girls I was with reminded me of puppies--they had high highs and low lows. The highs were accompanied by loud music, lots of laughter, drinking too much soda, and eating gigantic proportions of food. The lows were hard to wake up kids in the morning and sleeping kids after skiing on the drive back to where we stayed. When skiing I did not see much of my son or his friends. They went one way and I suspect wanted to strike out on their own without adult supervision. I cannot blame them too much as this is exactly what I would have done if I were seventeen and had my girlfriend with me as my son did. We all had a great time and I particularly enjoyed the evenings as I was able to socialize with friends while my son did the same thing with his peers.

The weekend was enhanced by good weather and the snow condition when skiing was excellent. The weekend for me had two highlights.

First, we skied at Sugarbush, Mt. Ellen. I skied with Vermont Adaptive and was lucky to have two great instructors. While all the instructors at Vermont Adaptive are good I happen to have a good rapport with the two people I went skiing with. I am proud to report I continue to make progress and have gotten over much of the fear I once had. I truly trust my equipment to do what it is supposed to do and spent most of the day on intermediate terrain. The best part of the trip though was making it to the top of the mountain. The lower mountain was socked in by clouds. It was pretty foggy and we heard it was clear at the top. Relying on iffy second hand reports we took the lift to the top of the mountain and at the second to last stanchion broke through the clouds. A crystal clear blue sky and trees covered in snow and ice were a sight to behold. I was not the only person to be amazed by the beauty. A group of people stopped near the lift and were looking at the cloud covered valley below. It was truly breath taking and something that I hope to never forget. When I see a sight like that I realize what gift life is and how marvelous nature can be.

Second, at the start of one run we stopped to discuss what direction we were going to go when I noticed two small girls skiing with their father. I was obviously fascinating to them as they were flat out starring at me in wonder and burning with curiosity. I caught their eye, said hello and asked them if they had any questions. Delight spread across their faces and they wanted to know how I skied, got on and off the lift, and if it was fun to sit ski. Their father looked mortified and I hope the broad smile on my face was evidence that his kids questions were welcome. I assure these girls skiing was fun, that with a little help getting and off the lift was no problem and asked them if they would like to watch me go and ski first. This delighted them even more and now the pressure was on! I had better not fall, spend any time traversing, and show them what I could do. I am happy to report that I did well and went about half way down the mountain before stopping and was delighted to see that the two kids had followed me the entire way. When we chatted again I told them that this time I was going to follow them and wanted to see how good they were. This too delighted the girls and off they went.

My experience getting off the lift that revealed a brilliant blue ski and short exchange with the two kids emphasized why skiing is so much fun for me personally and has the potential to change the way people perceive disability. The two kids I met on the slopes thought I was cool. They did not care one iota that I used a wheelchair and could not walk. They saw a person skiing in a different way and wanted to know if it was fun. This was innocent curiosity and open mindedness at is best. I would like to think those two kids will remember my broad smile, willingness to answer questions, and assurance that sit skiing is fun. And for most people the point of skiing is to have fun. So today days after skiing and getting back to work I still have a smile on my face. I changed the world or maybe at least influenced two little kids and saw a magnificent sight that is etched in my mind. I did all this and enabled my son to have an awesome weekend as well. Life is feeling really good right now.