Posted: June 29, 2018

Joshua and Darcy’s Story

#TeamMarsden

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It is a moment etched on their parents’ minds forever: when miracle twins born at just 23 weeks reached out and held each other’s hands for the first time.

Joshua and Darcy Marsden from Wigton, Cumbria, spent their first few weeks in the world fighting for life almost 40 miles apart in different hospitals and over 70 miles from their home. But the moment they were reunited on their mum Mandy’s chest, they instinctively reached out to each other for comfort.

The family’s traumatic journey began after Mandy was rushed across the Pennines on a snowy March night to the North East for specialist neonatal care when she went into labour four months before her due date.

But now the twins who defied the odds to survive have returned home together after five months in hospital and are making fantastic progress.

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As a thank you to the hospital teams who helped them through what they describe as a rollercoaster of emotion, the family are raising money for The Tiny Lives Trust, the charity that supports the work of the neonatal unit at the Royal Victoria Infirmary (RVI) in Newcastle, which provides specialist care for over 700 sick and premature babies from across the North East and Cumbria every year.

“Sometimes I just look at them and I can’t believe they are both here,” said Mandy, 33. “We thought we had lost them so many times, but they just wouldn’t give up.

“It had just been a normal pregnancy, we were really excited about having twins and everything had been fine. Then suddenly I found myself at the other side of the country, 70 miles from my family and friends and with my babies fighting for their lives in hospitals nearly 40 miles apart.

“It was so hard, each day I had to ask myself, ‘which child am I going to visit? Which one is most likely to die today?’ It was awful, I just felt why us? Why did they deserve this start in life?”

Their epic journey began when Mandy went into labour and doctors at the Cumberland Infirmary in Carlisle took the decision to transfer her across the country to Teesside, to avoid moving the babies once they born.

“It was a race against time,” said Mandy, a team leader at Jobcentre Plus in Workington.  “It was the worst journey of my life and absolutely terrifying. It was snowing and there was lots of traffic and if they had been born on the way, there was no chance they would survive. They told me that a single baby born before 24 weeks has just a 16% chance of survival – it would be less for twins.

“When they were born there were two teams of medical staff all ready to start work on them. I remember hearing two small cries, like kittens mewing, which gave us hope, we knew the spark of life was there.”

It wasn’t until a number of hours later that the new mum and dad first saw their babies. “They were so tiny, their skin was transparent, like little aliens, and they were covered in wires and tubes. But it was amazing how we just felt such instant love for them and we were able to sit and hold their hands,” said Adam, who works in Carlisle Jobcentre Plus as a work advisor.

“It’s so hard, you are a hormonal mum and all you want to do is pick them up and hold them, but you can’t,” added Mandy.

Joshua was born first on March 2 weighing 1lb 5oz followed by Darcy weighing 1lb 6oz.

For the first nine days, the babies were cared for on the unit, with their parents living hour to hour. Then doctors told them Joshua had a perforated bowel and he would need to be moved to the RVI in Newcastle for emergency surgery.

“We didn’t know what to do,” recalls Mandy. “Did one of us stay with each child? We decided that if we were going to lose one of them, then we needed to be together, so we decided to go with Joshua. Leaving Darcy was the hardest thing I’ve had to do, but the staff supported us all the way.

“We didn’t have a car, as we’d left it at the hospital in Carlisle. So getting up and down was difficult. We rang constantly for updates and then a friend came over from Carlisle and picked us up and took us down to see her.”

After three weeks Darcy was transferred to the RVI, with both babies undergoing life-saving bowel surgery within hours of each other.

“When Darcy went in for her surgery, for the first time no one really expected her to pull through,” Mandy said.  “We were told that she was so poorly, we needed to prepare ourselves. But thankfully she didn’t agree and she made it through.

“It was when they were eight weeks old that I first held them both together. They were both on my chest and Darcy reached out and held Joshua’s hand.

“Over the next few months, there were still ups and downs and more surgery, but we stayed positive and celebrated every milestone that we had with them. Then gradually they started to get stronger and then it was no longer about ‘if’ they went home, but ‘when’.”

Adam returned to work four days a week, making the train journey back and forward from Carlisle to Newcastle to visit his family, while Mandy was able to stay in the family flats at Crawford House, at the RVI until the family were finally discharged and able to make the journey home on July 26.

“Thanks to the amazing doctors at both hospitals, my children are now home with us and we are so happy,” said Mandy.

Darcy recently underwent further surgery to have a stoma reversed and while they are both still on oxygen, doctors remain astounded by their progress.

Mandy praised the extra support for parents funded by Tiny Lives including developmental care aids, the dedicated social worker Fiona Ewing, neonatal physio Pat Dulson and also the financial help they received with travel and parking costs.

Mandy also found the bonding aid called Miniboos, funded by the charity, especially vital in building a bond with her children when they were so far apart. They work by absorbing the scents of baby and mum, so they can smell each other, helping bonding and also breast-feeding or expressing breast milk.

“It really helped that bond in the early days, especially when Darcy was over 40 miles away – I could still smell her. Everything in special care has to be so clinical – yet this was one real human touch that made such a difference.

“Fiona the social worker was also so supportive, helping us with the financial side of things and advising Adam as he returned to work. She also listens to you and it is really helpful to be able to open up to someone who is a bit more detached from the medical side of things.

“Having access to physio was also so important. When you have such a tiny baby, you don’t know how best to hold them, or support them and there are all the wires and breathing tubes, so Pat’s advice was vital.”

Mandy and Adam have already raised almost £1,000 with the help of family and friends who are rallying behind them, taking part in fundraising activities from running the Sydney Half Marathon to donating money in lieu of wedding favours.

“When I thought about premature babies, I just thought of babies in an incubator, but there is so much more: all the operations, the long term care, the emotional and financial impact on families and then the return home.

“It was even harder being so far away from home, and we wanted to help raise awareness of how Tiny Lives is supporting families from Cumbria too.

“The staff on both units held them for us when we weren’t there, they comforted them, they comforted us, they saw us at our worst and best.

“Because of the medical staff at those hospitals we brought our children home, how do you thank someone for that?”

Team Marsden chose to fundraise for Tiny Lives

In March 2016, Joshua and Darcy celebrated their first birthday, with friends and family fundraising for Tiny Lives, and they have continued to be dedicated fundraisers ever since!

Super Mario photoFeb 2016

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