Not just a diagnosis; a baby, with a family.

A new publication in Acta Paediatrica is written by 3 mothers (Thiele P, Berg SF, Farlow B: More than a diagnosis. Acta Paediatrica 2013 seems to be open access). All 3 of them have previously written about their experiences with the medical system following a diagnosis of a serious chromosomal abnormality, and the lack of support and compassion that they confronted. But no, I am not complaining about duplicate publication! I think these 3 highly educated and articulate women have experienced attitudes that remain unfortunately widespread, and their stories deserve the widest distribution. These 3 women, 3  mothers, are from 3 different countries on 3 different continents. But they have all experienced the same lack of comprehension and lack of, sometimes refusal to, help. The common thread in their stories was that they valued the life of their child, even though they knew that life would have serious limitations and would probably be very short. They valued the life of their child even though they had a diagnosis that has been referred to in the past as ‘universally lethal’ and even though some physicians have decided that instituting active care is ‘clearly against the child’s best interests’ and that physicians who do so are ‘abdicating’ their ethical responsibilities.

The mothers point out that they want, and have a right to expect, an approach to the care of them and their children which goes beyond identifying the diagnosis and then deciding that all children with such diagnoses will not receive medical interventions. I have been privileged to learn from these women and others with similar stories; it seems to me that all they want is to be treated, and have their children treated, as individuals. To have their wishes, desires, hopes, and values listened to and considered, to have all reasonable options explained and then take a decision, open and transparently shared with their caregivers.

I mentioned in a previous blog that I think that attitudes are changing, one of the comments that was left was ‘not here they aren’t!’ But because attitudes may be changing, that certainly does not imply that they are anywhere near what they should be, or that all caregivers are going to become thoughtful, compassionate and supportive.

Often parents have been told that ‘there is nothing that we can do for your baby’. Annie Janvier and Andrew Watkins have written an article accompanying the mothers’ stories (which also seems to be free access) in one section of it they talk about that frequently heard statement:

There is always something we can do. For some extremely fragile children with several major malformation and /or low birth weight, [life sustaining interventions] can indeed be quantitatively futile, but we can always be there to support families in these tragic moments. We can guarantee that we will do everything in our power to treat any pain of discomfort their child may have. We can tell parents that the most important thing is that this child has parents who care and love him. That we also hope that they will meet their child and be a family for a while. While it is important to not give unrealistic hopes to parents, we can assure them that we will do everything for their child to have the best life possible.

About Keith Barrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Advocating for impaired children and tagged . Bookmark the permalink.

1 Response to Not just a diagnosis; a baby, with a family.

  1. Gonzalo Mariani says:

    Being there…
    Not only is this a problem all over the world, but also in every area of medicine. In Momma and the Meaning of Life: Tales of Psychotherapy, by Irvin Yalom, the author describes a life-changing encounter with a terminal cancer patient, Paula.
    The following is a memorable paragraph of his book:
    She cried when she told me about calling her surgeon, a friend of twenty years, only to be informed by his nurse that there were to be no further appointments because the doctor had nothing more to offer. “What is wrong with doctors? Why don’t they understand the importance of sheer presence?” she asked me. “Why can’t they realize that the very moment they have nothing else to offer is the moment they are most needed?”

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