Category Archives: Advocating for impaired children

A philosopher and a theologian debate neonatology; confusion results

I came across this article from a philosopher who apparently does bioethics, the title is, ‘what should we do about severely impaired newborns?’ The article is a report (by the philosopher) of a debate at the American Association of Thoracic … Continue reading

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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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