Category Archives: Advocating for impaired children

Still Perpetuating Prejudice Against Preterms

Our commentary has just been published in Paediatrics and Child Health, the CPS journal together with a response from the Society. (they seem to be open access, but I am not certain). I am disappointed by the response, but not … Continue reading

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More than a diagnosis

The latest from Annie Janvier and team, a publication describing the experiences of families in their internet support group questionnaire study. this particular publication is interested in what happened to families that had a prenatal diagnosis, of trisomy 13 or trisomy … Continue reading

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Communication ability in persons with trisomy 18 and trisomy 13

As a neonatologist there is much important pediatric literature that I do not follow. There is much that has relevance to what we do in the NICU, so much that no-one can keep up with it all. Many of us are … Continue reading

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Perpetuating Prejudice against Preterms: 5. Impairment, what does it mean?

Towards the end of last year the Canadian Pediatric Society published a new ‘position statement’. These are official proclamations of the society, supposedly based on the best available evidence to guide practice, and which become de facto standards of care. … Continue reading

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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 … Continue reading

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“There is no foot too small that it cannot leave an imprint on this world”

This link will take you to a very touching tribute written by a 16 year old to his little sister. It is a very personal essay, about his love for the girl who died at 6 weeks of age, but … Continue reading

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When she died there was a hailstorm, it was as if the Angels cried.

Evy Kristine (the little girl that Siri Berg, her mother, wrote about) has a website, with a page in English. The title of this post is taken from one of the two very moving poems you can find there written … Continue reading

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‘Why were they in such a hurry to see her die?’

That quotation is the title of a touching and thought provoking article just published (Berg SF, Paulsen OG, Carter BS. Why Were They in Such a Hurry to See Her Die? American Journal of Hospice and Palliative Medicine. 2013;30(4):406-8.) It … Continue reading

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Predicting outcomes in preterm infants: is it time to throw away the ultrasound machine?

It is common practice, nearly universal, I would guess, to perform head ultrasounds in the 1st week of life as a way to predict which very preterm babies will have very poor outcomes, and then to consider redirection of care … Continue reading

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‘Creating’ impairment?

A new publication by Annie Janvier and Marc Mercurio, which tries to explain why newborn infants, and especially preterm infants, are treated differently to older children and adults. (Janvier A, Mercurio MR: Saving vs creating: perceptions of intensive care at different ages … Continue reading

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