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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...
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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...
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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...
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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...
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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...
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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...
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Early neonatal outcomes in trisomy 13 and 18
One of the things that has changed greatly over the years, in my practice and in medical practice in general, is the approach to some congenital anomalies, particularly to serious chromosomal...
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Long term survival in trisomy 13 and 18
After my previous post on this topic, John Lantos wrote a comment pointing out this recent publication, Nelson KE, et al. Survival and Surgical Interventions for Children With Trisomy 13 and 18. JAMA....
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A new publication
Janvier A, Farlow B, Barrington KJ. Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet C Semin Med Genet. 2016: This new article draws on the results...
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