The parents of a three-month-old boy who they fear has just days to live say they are frustrated at being unable to access lifesaving treatment because a suitable hospital bed is not available. Dylan and Catrin Green from Cardiff took Macs to hospital six weeks ago after he struggled feeding, and he later suffered two cardiac arrests and was diagnosed with dilated cardiomyopathy, a heart condition which can lead to heart failure.
He urgently needs a "Berlin heart" device, which could stabilise his condition while he is in intensive care awaiting a heart transplant. The organisation which commissions specialist NHS care in Wales said funding was available but treatment was decided by clinical assessment.
Two weeks ago, Macs was transferred to a specialist unit in Bristol where his condition has since deteriorated. He is now in an induced coma with a machine performing the usual function of the heart.
His family said he needed to be moved to one of two specialist hospitals which can offer the Berlin heart, a highly specialised pump which acts as a bridge to a transplant, but, at the moment, no beds were available.
The family also shared a picture of Macs with his siblings Caio, four, and Gruff, three.
What are Macs' parents saying?
Catrin told BBC-produced Newyddion S4C that the situation has been extremely difficult for the family and that they are frustrated by the delay in getting treatment that could save his life.
"Seeing him in hospital is so difficult for us," Catrin told BBC-produced Newyddion S4C.
"It's really frustrating knowing there is a treatment available which could save his life."
She said he could lead a full life with the Berlin heart, even though he would need to remain in hospital for an extended period.
"He could lead a full life with the Berlin heart. Although he would have to remain in hospital for an extended period, he would be able to learn to crawl, to walk.
"It would be really nice to reach that stage."
She said the family was desperate for hospitals to find a bed for him.
"The clock is ticking for him - we just need a bed."
How common is the Berlin heart in the UK?
Figures from NHS Blood and Transplant (NHSBT) suggest fewer than five patients in Wales and England are currently using a Berlin heart, a device which can be used for several months before a transplant.
The two specialist hospitals in the UK where the Berlin heart can be fitted are Great Ormond Street Hospital in London and the Great North Children's Hospital in Newcastle.
Why is the family highlighting organ donation?
With only 2% of deceased organ donors in the UK being under 18, Macs' family also wants to raise awareness about the importance of organ donation.
"It's not a nice subject to be discussing, but the more people who donate organs, they can help children like Macs lead a full and happy life," said Dylan.
The family hopes more awareness could help children who need transplants in future.
What has NHS Wales said?
The NHS Wales Joint Commissioning Committee (NWJCC) said it recognised the "difficult and stressful time this must be for Macs' parents, family and friends".
It said that, while funding was available for patients who required highly specialised services, capacity was managed on a UK-wide basis and access to treatment was determined through clinical assessment.
"We understand that the specialist teams involved in Macs' case remain focused on supporting him to ensure he receives the care and treatment he needs."
Specialist teams continue to support Macs as the family waits for a bed to become available at one of the hospitals able to fit the Berlin heart.
