Category Archives: Advocating for impaired children

Babies with Super Powers

Rachel Callander is a professional photographer from New Zealand who had a baby with a congenital problem that led to disability, and a sadly brief life. Like many parents in such a situation, Rachel was totally honest about her daughter, … Continue reading

Posted in Advocating for impaired children, Neonatal Research | Tagged | 2 Comments

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

Posted in Advocating for impaired children, Neonatal Research | 9 Comments

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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