Most parents not able to stay with premature babies

The unit puts the whole family at the forefront of thinking not just the patient [BBC]

For every 10 cots on a neonatal unit in Wales, there is only one room for parents to stay with their baby, according to research.

Charity Bliss said facilities that allow families to stay with premature babies are "not routinely very well provided" across the UK.

It is why five two-bedroom houses at Swansea's Singleton Hospital are seen as so important to families experiencing the most traumatic of times.

The houses are also saving parents from north, west and mid Wales hundreds of pounds in travel costs, and allowing them to spend more precious time at their child's side.

Of 28,000 babies born in Wales' 26 maternity units each year, about 9% will need treatment on a neonatal ward.

“You spend so many hours on the bedside, you just need somewhere you can switch off a little bit, have some sleep before you do it all again the next day,” said Bethan Wyn Evans.

“Caring for those parents is as important as caring for those babies because they need each other, so putting a roof over parents' heads when they’re in that moment of need is so important.”

Bethan, from Llangunnor, Carmarthenshire, had baby Mari at 31 weeks in December 2021.

Scans at 28 weeks had shown Mari had “fluid going around her brain, [it had] filled her lungs and down her back", with her mother describing the situation as "severely critical".

Three weeks later, after two procedures, Bethan went into labour, and Mari was born in a “severe condition” weighing 3lbs 10oz.

Without the fluid, doctors estimate Mari’s weight was closer to 1.5lbs.

When she was seven weeks old, Bethan and her husband Carwyn were able to take their little girl from Carmarthenshire to Swansea's Singleton Hospital.

Bethan said: “It’s a 40 minute drive without traffic, there’s always traffic, so it would be more than that – up to an hour.

"I wouldn’t do it. I wouldn’t be that far away from Mari, no way.”

They were able to use the accommodation at the hospital, which is called Clos Cwtsh, with Bethan adding: "Being just across the road meant that I could be there for her at any point.

“If you want a place where parents can really switch off, so they can be 100% for their child, they need some love and care."

The facility has been a great comfort to Mari and her family [BBC]

While she was full of praise for the provision, she believes it needs to be renovated.

It is a sentiment shared by the team at the hospital, who are raising money for work to be carried out.

The homes can feel "clinical", believes deputy head of nursing at the Swansea Bay health board, Janet Millward.

“The feedback provided to us was that it needed an uplift," she said.

The unit at Singleton Hospital is one of nine in Wales that can look after children who need neonatal care.

Janet said parents can be “emotional and distressed” and the homes have “everything that a family would need while they’re away from home.”

These families come from as far away as Aberystwyth in Ceredigion, Pembrokeshire and the Betsi Cadwaladr health board area in north Wales.

“If we’re the only neonatal ICU available in Wales, the families have to travel a long distance," she added.

"So we want to make sure we have that high standard of accommodation for them to stay in Swansea with us.

“If we don’t look after the parents, they can’t look after their babies.”

“We ask parents to have a very practical, hands on approach to their care on the unit and therefore they need to be local," said paediatric physiotherapist Ceri Selman.

“We know that babies, where parents are on the unit, a lot of the time, do better developmentally.”

Neonatal charity Bliss' campaigns manager Beth McCleverty said its research, due to be published later this year, shows “for every 10 cots in Wales, there’s only one room on the neonatal unit for parents to stay with their baby".

“So that’s a very small proportion of families in Wales who really get very good support," she added.

“It’s very important for parents to be involved in their baby’s care and they can’t do that for half the time because they’re at home overnight.”

Janet Millward and Ceri Selman
The accommodation was described as "incredibly impactful" by a nurse [BBC]

Ms McCleverty said the research found outgoings were about £405 above usual household spend during these times.

Mari is now a healthy two-year-old.

Her dad, Carwyn, is running four ultramarathons in four days to raise money for a number of charities who helped the family when Mari was born, including Clos Cwtsh.

He said she "fills our life with joy", while Bethan added: “We’re really, really lucky.”