Tag Archives: trisomy

The multidisciplinary conference, a parental view.

When patients are more complex than average, or there are multiple complications, or difficult ethical issues, we frequently organize “multidisciplinary conferences” which involve all the medical consultants and nursing, often also our social work and/or psychology personnel and the spiritual … 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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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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“Our children are not a diagnosis”: the family experience of trisomy 13 and 18

Annie Janvier, Barb Farlow and Ben Wilfond have just published a rather disturbing study. At least I feel a bit disturbed. (Janvier A, Farlow B, Wilfond BS: The experience of families with children with trisomy 13 and 18 in social … Continue reading

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