Tag Archives: Handicap

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

Long term outcomes after Very Extremely Preterm Delivery

Another blog post suggested by a reader, this time from Jim Goodmar from San Diego. This study of neurological and developmental outcomes of babies born before 25 weeks is remarkable in a number of ways. (Herber-Jonat S, Streiftau S, Knauss … Continue reading

Posted in Neonatal Research, The CPS antenatal counselling statement | Tagged , , , | 4 Comments

A life of quality

Saroj Saigal has just published a very important review of long term quality of life of former preterm infants. As you can imagine, as she originated this area of study for the preterm, it is clearly written and thoughtful. (Saigal … Continue reading

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Is the glass 81% full or 19% empty?

The new Epicure 2 data show encouraging trends in outcomes in the UK and Ireland for extremely preterm babies. Survival rates have improved significantly over the whole of the British Isles, Here for example is one of the figures from … Continue reading

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I am Epicurious…

Two publications have just appeared from the EPICURE 2 study. The first (Costeloe KL, Hennessy EM, Haider S, Stacey F, Marlow N, Draper ES: Short term outcomes after extreme preterm birth in England: comparison of two birth cohorts in 1995 … Continue reading

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A life worth living? Who would want a child like that?

A troubling tale from an adult with a handicap has just been published. (Peace WJ: Comfort care as denial of personhood. Hastings Center Report 2012, 42(4):14-17.) When admitted to an acute care hospital with a serious wound the author was … 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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