Our son had a stroke in the womb

During a pregnancy scan, Emma and Dave were told their unborn baby had suffered a stroke in the womb and warned that his future was uncertain.

Their son, Robin, was born with significant and complex needs, and his parents were told he was possibly the youngest stroke survivor in the UK.

The couple, from Arnold in Nottinghamshire, are now determined to make sure Robin, six, lives every day as his “best life”.

Dave said: “We don’t know how long we have got him for.

“We do everything we can to make sure that however short his life might be, he’s had a full life.”

Emma’s pregnancy was normal up until the 20-week scan, when the couple were told there was a problem.

Dave, 47, said: “We went in expecting it to be routine and that day was anything but routine.

“They told us there were lots of anomalies on the scan and that started the process of us having to go in for weekly scans and be referred into foetal medicine.”

At the 25-week scan, Emma and Dave were told that Robin had suffered a stroke.

“When they said it, it was one of those moments of thinking that can’t be right, surely,” said Dave.

According to the Stroke Association, perinatal strokes – which happen in unborn and newborn babies – are very rare.

The couple, who have an older son, said the doctors did not know how it would affect Robin and whether he would survive.

Dave added: “We made a decision quite early on that if Robin was going to fight we would continue to fight and support him to get him out in the world.”

Robin was born at the Queen’s Medical Centre in Nottingham in February 2019, weighing 3lb 7oz.

He was given the middle name Buggsy after Dr George Bugg, the fetal consultant who supported the family.

The stroke had destroyed Robin’s corpus collosum, a bundle of nerves connecting the left and right cerebral hemispheres of the brain.

He needs round-the-clock care, and is unable to walk, talk, or swallow and has to be fed through a tube.

Robin spent five months in hospital before Emma and Dave were able to take him home.

Dave said: “We basically went through lots of different training to be able to look after him at home.

“Ever since then we’ve taken each day as it comes and made a pact that we will always have each day as his best life.”

The family has recently returned from a trip to Italy and spent the summer touring Europe with Robin.

They also make a point of seeing “as many Santas as possible” every Christmas – a tradition started by Emma, 45, a few years ago.

She said: “I’m perfectly happy that Robin has the best life.

“I guess when it comes to that moment, having no regrets is really the only thing you think about.”

Robin attends music and sensory therapy sessions at Rainbows Hospice at Loughborough in Leicestershire.

The hospice, run by Cope Children’s Trust, is a specialist palliative care service that supports babies, children, and young people up to the age of 25 with life-limiting and life-threatening conditions.

Emma and Dave said the support they received from the charity was vital.

“Rainbows really is the only time that we step back, it’s a mental break as well as a physical one,” Emma added.

Dave said: “Without Rainbows I think there would have been critical mistakes made.

“There are times when we’ve been absolutely exhausted and we’ve not got things right just because we’re so tired.”

The couple are supporting the hospice’s latest Christmas appeal to help raise the £8.5m it needs to provide end-of-life care for families.

Jane Burns, chief executive officer at Rainbows Hospice, said: “We couldn’t do what we do without the donations and support we get.

“I think pretty much all of our money bar 13% comes from donations from ordinary people.

“Fundamentally it’s about helping them [families] have the best of times at the worst of times.

“It’s really important that the children that we are caring for particularly those children who are reaching end of life are able to live, and live well.”