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Friday, July 27, 2012

Trisomy 13 and 18: How is Life Valued?

I deeply admire the work of Barb Farlow. I doubt many readers in the United States will know who she is. This is unfortunate as Farlow is all too rare in that she can write with great passion, steely resolve and ruthlessly uses facts to prove her points. In 2005 Farlow gave birth to Annie who had Trisomy 13 a rare condition. Most babies that receive this prenatal diagnosis are not brought to term. After much angst Farlow decided to give birth, a decision that was out of the norm. When her daughter Annie was born Farlow was relieved that her daughter did not have the common brain and heart defects associated with Trisomy. In the Hastings Center Report Farlow wrote that she and her husband wanted to give "Annie the same chances as a child without disabilities". In short, Farlow was realistic and knew Annie's life expectancy would likely be very short--Annie in fact died after just 80 days.  As a parent this gives me the chills, it truly shakes me to the core as I cannot imagine losing a child. What shook Farlow extended far beyond dealing with the death of her daughter.  After Annie's death Farlow requested Annie's medical records and within hours knew something was profoundly amiss. Without consent her daughter was labeled "not for intubation". This was the first revelation that would lead to many more that undoubtedly changed the direction of Farlow's life. Farlow is now an advocate for families with a child that has Trisomy and is fighting what I would label a good fight. What is she fighting for? For ethicists and physicians to acknowledge that children with Trisomy life should be valued.

In the Journal of Pediatrics Farlow along with Ben Wilfond and Anne Janier wrote "The Experiences of Families with Children with Trisomy 13 and 18 in Social Networks." This article calls into question the belief that Trisomy is a "lethal disorder". I am not questioning the mortality rate,  only 6-12% of babies with Trisomy live longer than a year. The American Academy of Pediatrics Neonatal  recommends against resuscitation. Children with Trisomy also have profound neurodevelopmental disabilities if they survive. Trisomy is without question a grim condition. However grim the condition is it does not mean children like Farlow's daughter Annie life lacks value. And this is where Farlow and web based social networks can and have played a key role. It is the parents of children with Trisomy that have called into question the belief Trisomy is "lethal". According to the article in Pediatrics parents were told Trisomy was incompatible with life. A child with this condition would suffer, live a meaningless life, ruin a marriage or harm a family. The message here is about as subtle as a brick thrown through a plate glass window--let your child die.

While I am not surprised by the article findings I hope it is a real eye opener for many physicians. In spite of profound disabilities and a short life virtually all parents reported a positive family life. Parents believed their children with Trisomy had a good quality of life. By itself this is critically important. In typical academic prose the authors conclude:

Our results suggest that there are many areas in which the parental experience of having a child with T13-18 differs profoundly from the “conventional” view within the medical community. Recently, many articles have been published pertaining to the ethical and medical management of children with T13-18. The quality of life of the child living with T13-18 is often described as a justification for not providing interventions for these diagnoses.

Yikes does this sound familiar to me. Quality of life assessments are incredibly subjective. In fact I have spent the last 30 years railing against the beliefs of others who deem my quality of life inherently inferior simply because I am paralyzed. If we as a society permit others to judge people with a disability as inferior abuse will remain rampant. The ADA will continue to be ignored. Thus when I read the article in question I immediately thought of a recent article in another medical journal Lancet. The WHO has reported that children with disabilities are four times more likely to experience violence when compared to typical nondisabled children. In the words of Etienne Krug, Director of WHO's Department of Violence and Injury Prevention and Disability "children with disabilities are disproportionately vulnerable to violence and their needs have been neglected for far too long." Why are children with disabilities abused? Risk factors include stigma, discrimination and ignorance about disability all of which are social problems.

One last point: I got to meet Barb Farlow earlier this month and went to the Hockey Hall of Fame with her two youngest sons and her eldest son. Spending the day with the Farlow family brought back a flood of warm memories--I am the product of a large Catholic family. I had great fun the day we met and was delighted to meet another person dedicated to protecting and advocating for the rights of people with a disability. We may be few in numbers but our resolve is strong.