Before Aidan got sick for the last time, I had blogged about the case of Baby MB, an 18-month-old boy in Britain with severe, and most likely fatal, disabilities.  The national health service wanted to discontinue his care, seeing his life as "intolerable," while his parents fought to keep him on a respirator and maintain his life for the months he had left before his affliction took his life.

    I had argued, on Confucian grounds, that the parent’s view should prevail.  From this point of view, the loving context provided by the parents should be understood as a key element, perhaps the defining element, of Baby MB’s "quality of life."   

    While we were in the hospital, it turns out that the parents have won the court case and will be able to keep Baby MB alive for some time longer.  The judge made recommendations that could amount to a "do not resuscitate" order, which sounds right to me.  But, more importantly, he recognized the importance of the parents’ love and care.  I will post an excerpt from the judge’s decision below, which echoes what Confucius might have said: "Cherish the young."

   From the Justice Holman’s decision in the Baby MB case:

66. There is no doubt that he has been in a bonded parent/sibling/child
relationship with his parents and brother and sister in the past. He
used, when he could, to smile at them and react positively and with
pleasure to their presence. Although he no longer has the capacity to
smile, I can see no reason which would justify an assumption that he
derives any less pleasure now from their presence and the relationship.
If he did still possess the physical capacity to smile and communicate,
the absence of smiles might tell one much about the relationship or his
sense of pleasure. But as what he lacks is that capacity to smile and
communicate, the absence tells one nothing.

67. He is blessed with parents, especially his mother, but his
father, too, who have the time and ability, and also the willingness
and commitment to spend long periods of time with him – most of his
waking day. So the pleasure which I assume he gains from the
relationship is not short lived or occasional, but is available to him
as a constant part of his life for long periods of every day.

68. The parents themselves believe they can still detect reactions
of pleasure in that his eyebrows or corners of his mouth may move
slightly upwards. The doctors are sceptical. As I found the parents
sincere and honest witnesses I do not reject their evidence, and it may
be, because of their special relationship with him, that they are still
able to detect and do detect genuine reactions which are not visible to
others; or they may now be deluding themselves. But whether they do or
do not detect genuine reactions, it does not affect my view that
neither I, nor anyone, are justified in assuming that he derives less
pleasure now simply because he has lost the capacity to react.

Sam Crane Avatar

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4 responses to “Baby MB: A Good Outcome”

  1. Rosemary Gwaltney Avatar

    I just read “Aidan’s Way” for the third time, and came to look him up. I want to let you know what a wonderful life you gave him, what a loving view you had on his life, and how grateful I am that you shared him with the public.
    Aidan’s life was meaningful, important, and valuable. His story was very special to me. Thank you so much.

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  2. Rosemary Gwaltney Avatar

    I am so glad for Baby MB, and his parents, that he has received the opportunity and blessing to live and enjoy love for a longer time. What a horrifying world it would be, if our most helpless children no longer were allowed to remain with us.

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  3. Jeanna Huette Avatar

    I am glad for Baby MB’s Parents. These childen can survive longer now with the proper care.
    I care for a child(My Grand-daughter) at home with Type 1 Spinal Muscular Atrophy and she is over 3 years old. I am her primary care-giver.She is happy ,smart and very well loved.

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  4. Rob Maraby Avatar

    i just read “Aidan’s Way” as well! and i have only warm feelings for you! I wish there were more people like you around-this world would be a better place for sure

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