Or rather the voices of adults who were born very preterm. Saroj Saigal is well known to many of us in neonatology, either by reputation, or, for the lucky ones among us, as a friend.
Her insights into quality of life, what it means to our patients, and how patients evaluate their own quality of life, have been extremely influential, and have had a great impact on how we practice, and how we talk to parents. Her studies of adaptation to adult life among former very preterm babies were also eye-opening, and showed how well her cohort was doing as they entered adulthood.
Her latest innovation is to gather the stories of former preterm babies, now they are adults, and publish them as a book. You can buy her book from a number of places, just follow the links under the bookstore tab on her web-site at www.preemievoicesbook.com.
Also on the home page of her web-site there is a 25 minute video, which has several of the book contributors (and a couple of mothers) telling some of their stories to the camera. I found it quietly moving, and encouraging, adults with and without disabilities talk about their lives, and about how they see their prematurity.
Thanks again Saroj, you really make a difference.
I couldn’t agree more. The video is very powerful.
Saroj is my hero and a great inspiration in my work and my life.
When I was in the unit as the mother of a baby born at 24 weeks, the studies she published are among the rare ones who made sense to me as a parent.
Not a list of percentage of disabilities. But what these mean to children and their parents. How parents adapt.
How somehow, we can rewrite our story even if the first chapters are messed up.
Saroj has helped many children and parents write that story.
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