FEW families will have experienced the trauma and anguish of seeing not just one but two of their babies clinging to life in intensive care.

But that’s exactly the experience of Pepsi Evans and Scott James, whose baby boys Louie and Jacob were born prematurely.

They needed the very specialist care provided by Swansea Bay University Health Board’s Neonatal Intensive Care Unit at Singleton Hospital.

Sadly, the family, from Merthyr Tydfil, lost Louie shortly after he was born at 23 weeks in 2019, weighing less than a bag of sugar. 

Jacob, however, pulled through despite arriving in the world at 26 weeks and the family are now sharing their story to support a fundraising campaign being run by Swansea Bay Health Charity.

Pictured: Little Jacob in Singleton Hospital's NICU on his due day.

Its Cwtsh Clos Appeal aims to raise £160,000 to refurbish five houses on the Singleton site used by parents whose little ones are being cared for in the NICU and who live too far away to travel from home every day.

The NICU provides care and support for babies and families across a large swathe of Wales including Pembrokeshire, Aberystwyth and as far north as the Betsi Cadwaladr University Health Board area.

With the catchment area being so large, and families going through some of the most terrifying days of their lives, it’s essential for both parents and babies to spend as much time together as possible and for mums and dads to have somewhere close by where they can take a break and recharge their batteries to be at their best for their new arrivals.

Pepsi and Scott, who has two other children - Iyla and Noah - know only too well how priceless the NICU family accommodation is to new parents. But from experience, they also know a refurbishment and a few ‘home from home’ touches would make the five two-bedroom houses so much more welcoming for families in their hour of need.

“Although the houses helped us immensely, they lacked any sort of home comforts. It just felt very clinical,” said Pepsi. 

“We will forever be grateful for that opportunity, but they were in need of a big revamp when we used them.

“Things such as cushions, rugs, and more homely bits and bobs would have really helped - a few plants, and overall just a bit of colour. 

“There was no cooker in the house so my partner’s best friend would come down every few days and stock our freezer and fridge and cupboards with meals we could just warm up, which was a life saver.”

Pepsi and Scott’s experiences of Singleton’s NICU and the Cwtsh Clos houses started out of the blue in November 2019.

“It was my first pregnancy, and everything was going amazingly, with no concerns,” she said. 

“On the 18th of November, I was 22+6 weeks gestation but spontaneously went into labour. 

“As I was below what is termed 'viability', medical staff were unable to do anything to try to stop my labour until I reached 23 weeks. 

“I held on for a few hours until midnight on the 19th when they were finally able to give me medication to try to stop labour but by that time, it was too late. 

“Louie Scott Paul James was born at 2.58am, weighting 1lb 8oz at exactly 23 weeks. 

“As we’re from Merthyr Tydfil, we were transferred to Singleton’s specialist neonatal unit, which is about an hour away. 

“When we arrived, we were told that as we lived a distance away, and because Louie was so poorly, we were able to have free accommodation on the hospital site so we could be close by.

“We were given the key for house 3A. Louie unfortunately passed away at six days old on the 25th due to being extremely premature. If we weren't able to stay in the accommodation, we would have missed his final moments and wouldn't have had the chance to say our goodbyes.” 

Fast forward to October 2020 during the height of Covid pandemic and Pepsi was pregnant again. 

“This time, on the 3rd of October I once again went into spontaneous labour, at 26 weeks exactly.  As I was a little further gone, there was a lot more the hospital could do for me, and I was immediately transferred to Singleton’s NICU while in labour. 

“Jacob Scott Paul James was born via emergency C-Section at 9.13am on the 4th of October 2020 weighing 2lb 2ox at 26+1 weeks’ gestation. 

“Again, the staff explained that we were able to use the accommodation to be close to our baby. We were then given the key to a house. Remarkably, it was 3A again.

“At this point I was full of anxiety, back in the same hospital, in the same house not even 11 months after our journey with Louie, convinced that history was about to repeat itself. 

“Thankfully that was not the case. Jacob stayed in hospital for 117 days but today we have a happy, healthy four-year-old with no health conditions, although our stay was a huge rollercoaster.

“Our experience with Jacob was at the height of pandemic, when lockdown was at its strictest and you were not able to cross local authority borders.

“So the accommodation was an absolute life saver for us, as we have no idea how things would've worked out if we had had to travel to and from home every day. 

“It also gave us the opportunity to isolate ourselves, to ensure we wouldn’t be at risk of spreading Covid to the poorly babies and families in the unit.  

“The house allowed us to be close to Jacob when he needed one of many procedures to be carried out, which quite often would be after a 3am phone call asking us to head over to the unit as soon as possible.

“We were able to be there when he needed lumbar punctures, laser eye surgery, when he needed to go back on a ventilator, and also be there for many of his first milestones like his first bath, his first feeding and when he first opened his eyes. 

“I owe my son’s life to the unit, and all of the staff who helped us along the way and we will never be able to truly show how much we appreciate everything they’ve done for us.”

Now Pepsi and Scott are giving something back to the NICU and to other parents who will use the houses in the future by getting right behind the Cwtsh Clos Appeal and helping with a special fundraising occasion which takes place this Saturday.

Swansea City FC have very kindly dedicated their Championship fixture against Blackburn Rovers on February 22nd (kick-off 3pm) to supporting Cwtsh Clos, with a number of events on the day and bucket collections intended to raise the appeal’s profile and push fundraising closer to the £160,000 target. The family will attend the game, which, as big Swans fans, is their Saturday afternoon activity of choice.

“Jacob has a lot of Swans kits and my partner and his best friend are huge supporters and were season tickets holders last year, so it really is a great honour to be able to help and get involved with this special Swans game,” added Pepsi.

“We lost my mum in July, and in lieu of flowers, we asked for donations to the NICU and in total raised £500 which went towards making the stay for babies a little more comfortable. 

“The money paid for muslin cloths, blankets, bouncers, dummies and even snacks for the staff.

“But this appeal is something different and now it’s time to refurbish the houses to give parents some home from home comforts when they are terrified, vulnerable and so full of anxiety over their little miracles.  

“That’s why we’re right behind the Cwtsh Clos Appeal and if as many fans as possible can make it to the game and support both the fundraising and the Swans, that’ll be wonderful.”

You can support the Cwtsh Clos Appeal and get behind the Swans at the same time by getting down to the Swansea.com Stadium for the game.
But if you’re not a footy fan and would like to fundraise for our Cwtsh Clos Appeal, or hold a fundraising event, please visit our Enthuse donation page for Cwtsh Clos here, where you will find more information.