Tag Archives: trisomy

A new publication

Posted on 25 August 2016 by Keith Barrington

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 of the on-line survey that … Continue reading →

Posted in Advocating for impaired children, Neonatal Research | Tagged | 5 Comments

Long term survival in trisomy 13 and 18

Posted on 19 August 2016 by Keith Barrington

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. 2016;316(4):420-8. It is a large regional cohort, identified from … Continue reading →

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Early neonatal outcomes in trisomy 13 and 18

Posted on 15 August 2016 by Keith Barrington

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 anomalies. Trisomy 13 and 18 specifically have seen an … Continue reading →

Posted in Advocating for impaired children, Neonatal Research | Tagged , | 1 Comment

The multidisciplinary conference, a parental view.

Posted on 10 May 2016 by Keith Barrington

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

Posted on 6 January 2014 by Keith Barrington

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

Posted on 10 November 2013 by Keith Barrington

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.

Posted on 11 June 2013 by Keith Barrington

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?’

Posted on 7 June 2013 by Keith Barrington

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

Posted on 23 July 2012 by Keith Barrington

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 →

Posted in Advocating for impaired children | Tagged , , | 104 Comments