Category Archives: Advocating for impaired children

Life, and medicine, with a disability

Posted on 12 August 2017 by Keith Barrington

I met the author of this article at a CPS meeting a few years ago, she immediately impressed me with her unique perspective. Paige is a developmental pediatrician who does long-term follow-up of preterms, and is involved in developmental evaluation … Continue reading →

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

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

A Parent writes in the BMJ

Posted on 6 May 2015 by Keith Barrington

Published today, a brief article by a parent of a child with trisomy 18. Please read it, it won’t take more than a few minutes, but it could make a difference to how you interact with the next parent who … Continue reading →

Posted in Advocating for impaired children, Neonatal Research | Tagged , | 4 Comments

Babies with Super Powers

Posted on 8 September 2014 by Keith Barrington

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

Posted on 13 June 2014 by Keith Barrington

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

Posted on 24 January 2014 by Keith Barrington

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 →

Posted in Advocating for impaired children, The CPS antenatal counselling statement | Tagged , | Leave a comment

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 →

Posted in Advocating for impaired children | Tagged , | 18 Comments

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 →

Posted in Advocating for impaired children | Tagged , | 22 Comments