Sarah Brown has told how a part of her “will always be a little bit broken” after losing her premature baby daughter 20 years ago.
She said she and her husband, ex-prime minister Gordon Brown, feel the pain of Jennifer’s loss every day and their lives are a jigsaw that will always have a piece missing.
Their precious daughter was born seven weeks early in December 2001 at Forth Park Hospital in Kirkcaldy but died just 10 days later leaving the couple heartbroken.
Following the tragedy, the couple set up the Jennifer Brown Research Laboratory (JBRL) at Edinburgh University and the Theirworld Edinburgh Birth Cohort to research the causes of premature birth.
Sarah, 58, says the pain of losing Jennifer will never go away but her family take comfort knowing their tiny baby, who weighed just 2lb 4oz, inspired a legacy which has saved the lives of countless prem babies.
The PR executive, who married Gordon, 71, in 2000, said: “Losing a child is a huge, deep, deep loss. You never get over it and it will always be a part of you. You realise there will never be a fix and you will never go back to who you were before and that’s OK.
“You find a way to be you and to live and to laugh again and build all the other pieces of your life but there will always be a part of you that is a little bit broken – there is a missing piece.
“Your loss changes you forever. The thing that stops it being so painful is allowing yourself to love even what you have lost as the strength of your love keeps those you have lost with you.
“You are allowed to have all the love in the world. It’s a better way to be than pushing it away and hiding it.
“It’s painful but Gordon and I will always love Jennifer with all of our hearts. I will always be a mum of three.”
Sarah, who went on to have sons John, 18, and Fraser, 15, added: “We’ve never not talked about Jennifer. We have a photo of her up in the house and she is buried with Gordon’s parents in Fife so we are able to go and visit.
“I don’t want to make it too heavily a part of our boys’ lives but they know their sister’s story and that she was just with us for a short time.
“Jennifer’s life was very short but those 10 short days we spent with her were very precious and every second counted and mattered to us as a family.”
Jennifer’s death raised so many questions to which there were no answers and after receiving messages of support from so many other bereaved parents, the Browns realised they were not alone.
After discovering the shocking truth that one in every 100 pregnancies results in the loss of a child, Sarah, determined that something positive would come from her daughter’s death, set up the laboratory.
The JBRL is a true Scottish success story that is helping to supercharge research in a little understood area of medicine.
It carries out vital lifesaving research into the causes of early labour, what treatments can prevent it and how doctors and nurses can help newborn babies in the crucial early hours and days after birth.
Sarah said: “After realising how many families were going through what we were, we knew we had to use our position to make a difference.
“People were sending us funds and offering expertise which gave us the drive to set something up that would bring comfort to families by giving explanations and providing solutions.
“We didn’t realise we were embarking on such a huge journey. The lab took two years to set up and over the last 20 years its research has made a huge impact not just in the UK but globally.”
She added: “One particular area of study was on calibrating the amount of oxygen given to babies in incubators.
“It was this research which saved the life of the late Labour Party Leader John’s Smith’s granddaughter Ella, who was fighting for life in an incubator after her mum Kathryn had her at 28 weeks.
“When you hear stories like Ella’s you know what you are doing is worthwhile and I just want to do more and more.”
In 2015, the lab launched the Theirworld Edinburgh Birth Cohort.
This pioneering £1.5million study, the first of its kind in the world, set out to study 400 children as they grow into adulthood, providing insights into the long-term effects of premature birth on the brain.
Insights from the study could result in treatments to transform the lives of children born early.
Sarah said: “There is nothing like this anywhere in the world. The idea of running a cohort is brilliant.
“All the hospitals have their own specialist areas. We are proud to be contributing in a very significant way for premature babies through a study that will last 25 years.
“We are talking to parents whose kids are surviving and thriving and the study means we will learn as we go and that will help them as they go through life too.
“If we can go back and help with difficult pregnancies and even predict who is going to have difficulties it would make such a difference.
“I got to six months and no one thought there were any issues. I’m convinced something just doesn’t go wrong overnight.”
She added: “Professor James Boardman, who is scientific director of the laboratory, and his team are remarkable as are the families who have agreed to take part.
“The cohort beginners are just in their first and second years of school and there are younger ones coming behind. They are already getting vital information from the data they’ve collected.
“Theirworld contributed funding towards a state-of-the-art brain scanner which enables scans to be conducted safely on babies both before and after birth.
“It’s an amazing story of really talented people coming together with the support of the city of Edinburgh, the university and the hospital. I have so much faith in the scientists who are leading it.
“We just need to keep raising the funds to keep it going.”
Sarah says the 20th anniversary of losing Jennifer and starting her charity is “bittersweet”.
She said: “It’s been 20 years since we lost our daughter and there are still times when it really catches you unawares. But if this had not happened to me I would certainly not have got to know what I have.
“If I could turn the clock back and have it a different way I would but I can’t so trying to help others in Jennifer’s memory is now my mission.”
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