Assign a value of zero

During my first week of medical school, we watched a video that documented the life and death of a child diagnosed in utero with neurologically devastating spina bifida. The girl’s parents had been aware of her prognosis long before her birth, but chose not to terminate the pregnancy; they cared for her until her death at 8 years of age. Speaking several years afterward, they regretted nothing. They saw her, and the opportunity to take care of her, as a gift from God.

I distinctly remember sitting in the lecture hall and thinking to myself, you people are out of your fucking minds. I grew up with a disabled sibling, and I was pretty sure that disability had not been a gift, either to my brother or to my family. Disability ruined birthdays, strained family gatherings, and doubled the expectations of parents. Disability brought my family together only in that we together questioned my brother’s quality of life, and in the face of the way we responded to his limitations, the quality of our own lives. When disability united us, it was usually in grief.

Despite some significant personal progress, it remains difficult for me to see disability outside this framework, which has made working in the NICU (the neonatal intensive care unit) challenging at times. After all, the NICU is a bit of a disability factory: we keep alive babies whose chief challenges at birth are often the same challenges that predispose them to long-term, global impairment.

That’s not to say that we keep every baby alive. In our NICU’s work area, there’s a corkboard full of bar graphs demonstrating the likelihood of various levels of neurodevelopmental impairment based on a child’s gestational age at birth. When very premature births occur, we use these data to help guide parents toward resuscitation or palliation for their newborn.

Even with well-studied odds, there are many, many times when determining the likelihood of disability is a bit of a crapshoot. In these grey areas, the decision of whether to resuscitate or palliate hinges on a deeply personal calculation: Whether a family will sustain a net gain or a net loss by having a disabled child. Families like the one in the video sustain a gain. Other families, especially those comprised of a single parent under financial and emotional strain, sustain a loss.

In the discussions I overheard during my NICU rotation, the focus was uniformly on the impact of a child’s disability on a family’s quality of life, and on the ability of a family to provide for the needs of a disabled child. But in my own mind echoed a question I was ashamed of even thinking: are we sure that all NICU graduates are grateful they were kept alive?

I was relieved to hear that others—legitimate scientists, even—have asked the same question. For nearly 30 years, a group of Canadian investigators has been following a large group of kids born at extremely low birth weight (ELBW) and comparing them to a control group of kids with normal birth weights. (ELBW babies comprise a very large proportion of NICU admissions.) In a publication in October of this year, these investigators demonstrated something fascinating: although there were major differences in health status between the two groups of young adults, there was no difference in self-perceived health-related quality of life. Moreover, within the group of ELBW subjects, those with neurosensory impairments (like blindness or cerebral palsy) reported the same quality of life as the subjects without neurosensory impairment.

Only 5 people in the study said they’d rather be dead—3 in the ELBW group, and 2 in the normal birth weight group. Four of those 5 had mental health problems without any other impairment, suggesting that it’s depression more than a neurodevelopmental disability that’s behind their unhappiness.

These results include the proxy scores of 10 parents who responded on behalf of their severely disabled children, ranking their health-related quality of life on a scale between zero and one. And although scientific papers aren’t usually geared to pull at heart strings, I found this part especially poignant: only when the investigators substituted the parents’ scores with scores of zero was the average quality of life of the ELBW subjects significantly lower than that of the normal subjects. Put another way, it was only by the investigators’ calulations–not the patients’ or families’–that these lives seemed less worth living.

What you see depends on the lens through which you view it. Both scientists and sisters can assign a value of zero to the quality of life of people who, viewed through their own lenses, are doing just fine.

If disability is more uncomfortable to me than it is to people with disabilities, who of us needs more therapy?

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6 Comments on “Assign a value of zero”

  1. LF Says:

    What a provocative reflection…my brother is dating a woman with Cerebral Palsey. Everyone who knows her (including her) would state that her life is a gift – an inspiration to those of us who take our “normalcy” for granted. On the flip side, a friend of a friend who is newly pregnant says that she will have an abortion if there’s any indication of defects. As someone who has had a miscarriage and is in danger of having another, I’m devastated by the loss but also grateful that a fetus who could suffer chromosomal abnormalities is spared the agony. Good stuff to think about…

  2. EGM Says:

    blah, blah, deep thoughts, but more importantly: I don’t remember that movie at ALL! Was that the day that Mrs. Armstrong, the Wheel Chair Lady (who I feel pretty comfortable calling the Wheel Chair Lady becuase no one else in a wheel chair ever set foot, or should I say wheel, in our lecture hall. Shame on our unnamed academic institution!) came to talk with us?
    Oh, and: “If disability is more uncomfortable to me than it is to people with disabilities, who of us needs more therapy?” I can answer that, my dear! And, when BA gives you her analyst’s number (hi, BA, if you read this!), will you pass it on to me? Thanks! I have some patients right now who, well, let’s just say you summed it up nicely.

  3. K2 Says:

    I see disabilities every day in my job, but only once the children are school age. I don’t see them as young babies nor as adults, only as kids. Most of the work I do with them involves those who work/live with them like their teachers and parents. I’ve worked with hundreds if not thousands of kids with disabilities, and I have found one universal truth. Those who work/live with children that have significant physical impairments (e.g., Spina Bifida, Cerebral Palsey, etc.) are universally happier than those who work/ live with those who have emotional or behavioral impairments (e.g., ADHD, Autism, etc.). The difference in happiness for these 2 groups is HUGE. When I was pregnant, I said that I would rather my child be retarded than have an autism spectrum disorder because of what I had seen. Luckily, so far she seems fine, so I count my blessings. My theory is that when the problems are consistantly the same every day it must be easier than when the problems really seem to change on a whim of the emotion of the child.

  4. A. Says:

    I beg to differ. Your reservations regarding these “conditions” are well understood. However, just as structured good education and guidance can provide us with various learning opportunities, so can the presence of a disabled sibling enhance these opportunities.
    As with any “disaster” that befalls the human race, it’s not so much what happens that matters, but our perception of it and the resulting attitude toward it. If both parents see this as a gift, an opportunity to better themselves AND to teach their other children about benevolence, reciprocity, consideration blah blah blah, then, and maybe only then, peace shall come. and yes, family unity.

    Just like you, bright, warm, caring, and spunky as you are, have, and always will, brightened my life, so does your brother, with his simplicity innocence and BIG love..

    Your loving mother

  5. signout Says:

    LF: Interesting point. Babies-to-be don’t have personalities. 20-somethings do. Maybe that’s what makes it easier to say “scrap it” in the first case.
    Yes, EGM–I think it was even the same *day*. I can’t believe you remembered her name!
    K2–I’ll look that up.
    Mom–I love you, too.

  6. Pine Baroness Says:

    As a mother of a child with severe CP and sister to a brother with severe Autism, I can say from experience that it is a whole lot easier to be a parent of CP than a sibling of Autism.

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