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Mum highlights need for family accommodation in baby intensive care

Pictured- Bethan and Carwyn keeping vigil over Mari in NICU

Caring for parents of premature babies, in turn, enables them to be on top form to help their little ones, a grateful mum has stated.

Bethan Wyn Evans underlined the importance of family accommodation for those who have a baby or babies in Neonatal Intensive Care Units (NICU) when she shared the story her own daughter’s traumatic start to life.

Bethan, from Llangunnor in Carmarthenshire, has spoken out to help support Swansea Bay Health Charity’s Cwtsh Clos Appeal, which aims to raise £160,000 to refurbish and re-equip a terrace of five homes in the grounds of Singleton Hospital, made available to parents who do not live close by.

Mari in Singleton NICU

She said: “When we found out that we were able to have onsite accommodation it made a world of difference.

“Although we only live around 40 minutes away, travelling that amount of time, and spending 15 to 20 hours a day by your baby’s bedside, on top of the travelling, is just too much.

“Caring for parents who have babies in NICU is all important because they are there for each other. For the parents to be able to be on top form for their babies, the accommodation we had in Singleton was so important. We were so grateful for it.

“It’s the most difficult thing to watch, and no parent should have to go through it, but unfortunately it does happen. We are so lucky that we have that level of neonatal care in south Wales. The team were excellent in caring for Mari and caring for us as parents.

“When you are going through this traumatic experience, being cared for helped us cope with the situation that we were in.”

While still in the womb Bethan’s daughter, Mari Glyn, had been diagnosed with a life-threatening condition called congenital chylothorax, which meant she needed specialist treatment in St Michael’s Hospital in Bristol.

Thankfully, the care mother and daughter received proved top notch and Mari was born at 31 weeks on 22 December 2021 – sharing a birthday with her dad Carwyn.

Mari still faced a difficult road ahead, weighing just 3lbs 10oz – although without the fluid her condition caused to build up around her brain and lungs doctors estimated it was closer to 1.5lbs.

Pictured- the family celebrate Mari’s second birthday

Bethan said: “We had a really tough time there to be honest, it was touch and go whether Mari would pull through or not. But after five or six weeks she started to turn a corner for the better, and that’s when they told us they were preparing to get us back to Wales.”

At around seven weeks old Mari was transferred to the NICU in Singleton Hospital and her parents were provided accommodation in Cwtsh Clos.

However, the change of hospital brought an initial trepidation for Bethan and Carwyn.

Bethan said: “It was difficult for us to leave a place where we knew everyone so well but the staff at Singleton were brilliant, they put us at ease.

“Being completely honest, we were scared to begin with because the kit was different. The monitors were different, the machines that put the medicine into Mari were different. It was scary for us because it was an unknown.

“But what made the world of difference was that the staff were there to explain everything. We were part of her journey.

“When they came round in the morning they asked us to present Mari to them, because we were the ones who knew her better. And then we would discuss her level of care together and make decisions together.

That level of family integrated care was so important and made us part of Mari’s care. And, in turn, that cared for us because we could contribute to what was needed.”

Mari spent two weeks in Singleton before transferring to Glangwili Hospital in

Carmarthen, however, she soon needed to return for eye surgery.

Bethan said: “We had to go back to Singleton for another two week so Mari Glyn could undergo specialist eye surgery – they saved her eyesight.

“We were in Cwtsh Clos for four weeks in all and we were able to go straight home from there.”

The great news is Mari is now doing splendidly.

Cwtsh Clos

Her mum said: “We’ve had her two-year assessment and she’s developmentally on par with other two-year-olds and she’s just fantastic. She’s a really happy, bubbly, bouncy girl. She’s the best, and we are really lucky.

“We are fully aware of how lucky we are to have been able to take her home at the end of our long journey because it’s not the case for everybody.

“It’s one of the reasons why we feel this is so important – caring for the parents is just as important as caring for those babies.”

Now, to say thank you for the care the family received, Carwyn, Mari Glyn’s father, and a group of supporters will run from St Michael’s Hospital, Bristol, all the way home to Llangynnwr this August.

They will pass the three hospitals that saved Mari’s life, including a stop at Singleton Hospital and Cwtsh Clos, and will run ‘Mari Glyn’s Journey Home’ – over 110 miles in four days.

Bethan explained the importance of the Cwtsh Clos appeal.

She said: “I’d like to start by saying how grateful we were to have a roof over our heads because that’s the most important thing.

“The team in Swansea Bay and Singelton agree that the homes are in need of renovation. It was a very clinical environment with no home comforts and the furniture needed replacing.

“That’s why we have chosen the Cwtsh Clos Appeal as one of the charities we are fundraising for. It’s important for parents to have somewhere where they can just have that tiny respite before they go back to put in another 15 to 20 hour shift by the baby’s bedside.

“For them to be able to be at their best, they need to be cared for. That’s why we are supporting this renovation as part of Mari Glyn’s Journey Home, which is our campaign to thank the hospitals and charities that supported us during Mari’s literal journey, from Bristol to Singleton to Glangwili to home.”

The family’s story will feature in an hour long documentary on S4C’s Heno on the 26th of August.

Lewis Bradley, support manager for Swansea Bay Health Charity, said: “The team at Swansea Bay Health Charity are truly grateful that Bethan and Carwyn are supporting our Cwtsh Clos appeal. Without stories like theirs, it is difficult to demonstrate the true support that Cwtsh Clos gives a family during a time of uncertainty.

“It’s fantastic to see that little Mari is doing tremendously well and that their needs were met with care and support by the neonatal staff, giving them the opportunity of staying close to the unit really makes a different to a family in more ways than one.

“This is why the renovation of the five, two bed houses is vitally important for the support it provides to families now and in the future.

“We would also like to wish Carwyn good luck in his fundraising endeavour where he is running four ultramarathons consecutively, recreating the journey that Mari and the family had to travel before going back home.”