I want to talk to you about quality of life. Specifically, the quality of life experienced by children diagnosed with Full Trisomy 13 or Trisomy 18. In this post, I hope to dispel some of the myths and misunderstandings that many people hold about the quality of the lives led by Trisomy children, as well as the lives of their families.
Quality of life: What is it & how can we measure it in a Trisomy child?
The first question to ask is, what do we mean when we say quality of life.
Well, the Cambridge dictionary defines quality of life as:
“the level of satisfaction and comfort that a person or group enjoys”
As straightforward as this sounds, it is nowhere near as simple to state exactly what constitutes a GOOD or BAD quality of life, because this is something that each individual defines and redefines themselves, for themselves, over and over throughout their lives. It is based on a variety of factors including their culture, education level, upbringing, and personality traits. It is a highly subjective, highly relative term that is incredibly difficult to define.
Usually, the best way to find out somebody’s quality of life is simply, to ask them. However, due to their severe intellectual impairment, unfortunately, trisomy children are almost always entirely non-verbal. They may, at some point in their lives, acquire the ability to understand and even use a few key words to express themselves, however, in the vast majority of cases, trisomy children cannot verbally communicate their thoughts and feelings in clear and precise ways. This means that we must rely upon non-verbal cues to try to understand how they are feeling; to assess their quality of life on their behalf.
As the father of a 3 year old trisomy 13 boy, the signs that I use to understand my son’s quality of life are as follows. Is he playing with his toys or does he appear restless; often dropping his toys and appearing to search for something that he never finds? Is he smiling often throughout the day whilst playing with his toys or rolling around? Does he smile or laugh when I tickle him or talk to him, or is he unresponsive to my interactions? How often is he crying and for what discernable reasons, if any? Is he sleeping soundly, or waking up regularly?
Asking myself these questions is the best way for me to get the clearest possible picture of his internal state, and use this information to determine how to best take care of him, and ensure that he has the highest possible quality of life.
Misconception 1 : Trisomy children live a life of pain & misery
The first misconception that I want to address is that trisomy children exist in a near-constant state of pain, discomfort and misery; that their lives are painful, arduous affairs. In actuality, nothing could be further from the truth.
Whilst it is an unfortunate fact that trisomy children are often subjected to more hospital visits, surgeries, and other medical procedures than the average child, these periods of stress, pain and hardship are very much the exception in the average trisomy child’s life. The vast majority of their time is spent at home with their families, surrounded by love and made to be as comfortable as possible at all times.
In a study done in the Journal of Pediatrics, 97% of the parents of the trisomy children studied, stated that their children were “happy” and that they had a positive view of the quality of life of their family and child.
It is an unfortunate fact that many people instinctively judge people with severe mental or physical disabilities as likely to be leading lives of low quality. However, this is inaccurate to the point of absurdity. The fact is that many people with the most severe of disabilities are actually some of the happiest, most fulfilled, most content people among us. Their lives are limited and restricted by forces outside their control, but they push forward, survive and even thrive in spite of their disabilities.
Trisomy children are completely unaware of the parts of life that are unattainable to them. They do not lament their lack of intellectual proficiency or physical dexterity. They are not lying around all day curled up in bed, grieving the loss of their ability to speak or run or dance. They don’t understand, and know nothing of, the world around them. They exist in their own worlds, in their own bubbles. It is the job of their parents and carers to ensure those bubbles are the happiest most comfortable places for them to live. And it is up to their parents and carers to assess and reassess their quality of lives for them, and do whatever they can to maintain the highest possible standard.
Misconception 2: Families of Trisomy children have a low quality of life
The second misconception that I want to erase from existence, is that trisomy children inflict a massive and unendurable burden on their families; condemning their parents to living in a damaged relationship, and their siblings to a life of reduced opportunity and relative neglect.
Of course, with the welcoming of a trisomy child into the family, comes a massive injection of potential stress, added financial pressure, and an investment of parental time and energy that is surpassed by little else. However, the same could be said for any genetically healthy baby that was left with disabilities after a difficult birth, or a parent who suddenly suffered a crippling injury. All challenges are accompanied with the risk of failure and the risk of suffering, of not just ourselves, but of our loved ones too. But they are also where we can find the most profound enlightenment, the deepest most secure human connections, and where we have the potential to grow as individuals, as partners and as parents.
It is also simply not a generalisable fact that all parents suffer when faced with the birth of a trisomy child. I myself, am the parent of both a trisomy child and a healthy child. And I can say with absolute certainty that our family is extraordinarily happy. My full trisomy 13 son enjoys all the comforts in life that he could ever dream of, and my daughter has as much of her parents’ attention that she could ever ask for; and ask, she does. Yes, our daily activities are sometimes restricted by my son’s condition, and yes, we have to plan our vacations and family outings more carefully than the average family; but I truly believe that we are an infinitely stronger and happier family WITH our son than WITHOUT him. And I can also say with certainty, that the vast majority, if not all, of the trisomy families that I know, would say exactly the same thing. In fact, I even know of some families who have adopted Trisomy children; and if that isn’t evidence that maybe trisomy children are not the life and liberty vampires that some people seem to think they are; then I don’t know what is.
Why is this important?
And finally, why is all this even important?
And in an article published in Acta Paediatrica, the authors discuss the profoundly detrimental impact that language such as ‘incompatible with life’ and ‘quality of life’ can have on the availability of health care options for Trisomy children; citing the unfortunate tendency of health care providers to view Life Sustaining Interventions such as heart surgery and tracheotomies, as being futile procedures that merely act to extend a life that is deemed not to be worth living. How do they come to the conclusion that Trisomy lives are not worth living? In a study published in “the Journal of the American Medical Association” on trisomy 13 children, the author states that “the phrase quality of life is misused as a synonym for physical or neurological impairment”. In other words; Trisomy children are severely disabled, and THUS their lives are not worth living, and THUS medical care should be withheld or be exclusively palliative.
As the parent of a trisomy 13 child, all of this is extremely familiar to me. We, too, faced an uphill battle when attempting to get the necessary care for our son. We initially followed the advice of our health care providers, but when they failed to provide the care that we believed to be best for our son, we sought out doctors and hospitals that would. We were and are eternally grateful to all of the doctors and nurses involved, who healed and cared for our son during his most vulnerable times; but I would be lying if I said that outdated conservative hospital policies and stubborn uninformed doctors did not hamper our efforts, and create hurdles and risks that we appreciated quite a lot less. We shouldn’t have had to fight for our son’s health care - nor should any of the other hundreds of trisomy parents that I know and know of. We all did, and would again, to the ends of the earth and back again, but we shouldn’t have to. And I hope, in the future, we won’t have to anymore.
Trisomy children’s lives ARE worth living.
In the beautiful words of Tracy Harkin,
My son is not incompatible with life.
He is the love of our lives.
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