Brighter future for premature babies: parents praise work of the Theirworld Edinburgh Birth Cohort

The sounds of excitement and laughter at a children’s party must seem a million miles away from the beeps of life-saving equipment in a neonatal unit.

It was definitely music to the ears of parents whose youngsters are taking part in groundbreaking research into premature babies. 

The Theirworld Edinburgh Birth Cohort aims to improve understanding of how being born early affects the brain and learning in children. Funded by Theirworld, the study tests and measures the progress of premature babies over 25 years.

The cohort’s annual party in Scotland’s capital city brought together dozens of children and their families for an afternoon of fun and food.

“The party is an opportunity for the team to say thank you to the families for taking part in the research,” said Professor James Boardman, the cohort’s Chief Investigator.

“It’s a great opportunity for the families to get together and talk about their experiences.”

The study draws on groundbreaking clinical and scientific research methods developed by the Jennifer Brown Research Laboratory at the University of Edinburgh. It started with an initial intake six years ago and the full cohort was launched in 2016.

With 260 children on board, it is still recruiting and includes babies who were born full-term for comparison purposes.

Ellon Easton was at the party with her five-year-old son George. Born just 29 weeks into her pregnancy, he weighed two pounds 15 ounces (1.3kg).

“He was born with collapsed lungs and stayed in hospital for 14 weeks,” said Ellon, from Midlothian. “He has moderate sleep apnoea and is on an inhaler – but he swims like a fish.” 

George was diagnosed with autism last year. Ellon says this has helped them to get the assistance he needs and that he is a “very happy child who loves his swimming”. She and husband Richard are delighted to be part of the birth cohort and described the staff as “fantastic”.

“What we went through with George when he was born, I wouldn’t wish that on anybody,” she added. “George is one of the lucky ones who has survived – albeit with some health issues.

“If there is anything we can do to help other babies not to be in that position, we’ll do it.”

Ben Greenall and Marie Montondo from Edinburgh have a two-year-old son called Connor, who was born 11 weeks early.

After two months in hospital, he went home before his official due date. He picks up lots of viruses and childhood illnesses, said Ben, but “always bounces back”.

“Even though we had got through that touch-and-go scenario, for the first 18 months I was constantly worried that there was going to be a learning difficulty,” he added. 

“But one thing that surprised me from the birth cohort tests is that the parents, including us, tend to underestimate their children’s abilities.

“If we can give him the best chance, as well as helping others, that’s great. We have been lucky with the start in life that Connor has had. These get-togethers with other families are lovely.”

Emma Torry is the mother of two children in the cohort. Her daughters Catherine, two, and three-month-old Rachel were both born full-term.

“We were approached by a midwife and asked to join the cohort. My husband and I agreed immediately,” she said. “Being born premature can affect your whole life, so I feel very proud being part of a study that is so important.”

Emma, from Edinburgh, said both girls had MRI scans soon after birth. The family goes through the same process as those with premature children, including questionnaires, health checks and eye-tracking tests.

“We want to be able to tell them when they get older that they’ve been part of the study,” she said. “Having two girls, I want to help them feel that science is an opportunity for them.”

Visit the Theirworld Edinburgh Birth Cohort website for more information.