In Baby Loss Awareness Week, Theirworld's Chair talks to the Griefcast podcast about her daughter Jennifer Brown and the research laboratory named after her.
The death of her daughter Jennifer in 2002 was a devastating experience for Sarah Brown. But it also spurred her on to help other parents of premature babies.
Out of the loss and grief came the Jennifer Brown Research Laboratory and the Theirworld Edinburgh Birth Cohort - two initiatives looking into the causes of babies being born early and finding better ways to care for them.
As part of Baby Loss Awareness Week, Sarah - who is the Chair of Theirworld - spoke about her experience on the award-winning Griefcast podcast, hosted by Cariad Lloyd. Sarah talked movingly about how she and husband Gordon lost Jennifer only 10 days after she was born.
Listen to the Griefcast episode in the player below - you can also find it on Apple Podcasts or Spotify UK.
“It’s a huge loss that Gordon and I live with every day. We can remember every single moment with her because it was so precious,” she said. “I learned not to let go of how much love you have for the person you have lost.
“The NHS was incredible. But no one could explain quite why it had happened. That set me off on another journey to try to think about what we could do to bring greater knowledge to that area. 18 years on, I can see that a lot of good has come out of that tragedy.”
Each year, 15 million children across the world are born less than 37 weeks into pregnancy. Preterm birth is the single biggest cause of death and disability among newborn babies and it is a leading cause of neurodevelopmental impairment in childhood.
The Jennifer Brown Research Laboratory was set up in 2004 at the University of Edinburgh by Theirworld. It is hosted by the MRC Centre for Reproductive Health.
It began with just four female doctors but has grown and created a team of world-class scientists and clinicians whose work is having a real impact on the lives of premature babies.
The team combines detailed biological and clinical information about mother and baby with magnetic resonance imaging (MRI) to better understand what happens and to develop new strategies to improve outcomes for families.
“The rate of neonatal deaths is still too high and there are still so many things to explore and understand. But the breakthroughs have been extraordinary. The laboratory has done some absolutely remarkable work,” Sarah said on Griefcast.
In 2015, the Jennifer Brown Research Laboratory - headed by Scientific Director Professor James Boardman - launched a pioneering study called the Theirworld Edinburgh Birth Cohort. It is following 400 young people from infancy to adulthood and will help to reach a broader understanding of developmental problems as a result of being born too early or too small.
It is the first study in the world to investigate the long-term effects of preterm birth on the developing brain.
The birth cohort’s recent work includes a project using an eye-tracker to measure what babies and young children prefer to look at. This can give an insight into how their brain works and what they are learning.