The parents of a Blyth baby boy who lived just six weeks have spoken of their heartbreak and their love for him. Little Miles Mason was born early - but all seemed well until, at about a week old, he began to struggle at home.
As reported by ChronicleLive, He was taken to hospital at Newcastle's RVI but his health continued to deteriorate and his kidneys were failing. He was given dialysis but in the end a specialist infant dialysis machine only available in Newcastle was the only thing keeping him alive.
Heartbreakingly, he died in his mother's arms last Saturday, just weeks old. Mum Laura Priestner said he had been their "little fighter to the end". She told ChronicleLive: "Things just got worse for Miles unfortunately. We knew we had made a decision when we thought there was nothing they could do for him - and we both said we would never give up on him, but we knew he might get to a point where it was such a struggle for him.
Laura said Miles' temperament and fighting spirit had been incredible - and added: "It was the hardest decision of our lives, but the right one. He lived up the name he had always been given - he was a little fighter to the end."
The family had raised more than £5,000 that will help to support the development of the special but rarely-used infant dialysis machine that gave Miles a chance - the NIDUS - although devastatingly he was not able to pull through.
The machine is so rarely used that - while it has been through successful clinical trials - it has not had the funding support thus far to get through regulatory approval. In cases like Miles', it has been used on humanitarian grounds, which essentially means that without trying this, a baby would die.
Miles' parents wanted to fight to ensure that what had been his ' last chance was also available for other babies in a similar state. Initially the family were told that there were only a limited number of "kits" for the machine and that it requires financial backing to get through development.
ChronicleLive understands that a letter written to the Guardian by retired medics Dr Malcolm Coulthard and Dr Heather Lambert - who created the machine - has seen some progress made when it comes to funding the NIDUS. Dr Coulthard, who remains an honorary consultant at the Royal Victoria Infirmary was involved in Miles' care.
Earlier in August, Miles' dad David told ChronicleLive what had happened to him. He said: ""e had got him home - Laura had had an emergency C-section but all seemed okay. He had had all of the checks and we were home about five days. On the Friday night he was up all night - just not settling.
"On the Saturday morning he wasn't taking bottles. The midwife came and took a look at him and we decided to take him into hospital. The doctors were unclear about what was going on.
"They decided we had to come over to the children's hospital - there were concerns about his potassium levels. But when he was transferred he took a downturn."
The doctors then tried carrying out dialysis with a machine designed for bigger children or adults, but this led to issues and could not be continued - and while a peritoneal dialysis catheter was fitted, this began to leak and doctors were anxious that this could cause a lethal infection.
This is where the NIDUS came in - though in the end it was not enough to save Miles. The family raised more than £5,000 to support the machine's development, and after Miles' passing, a friend has set up a second crowdfunding page to support them - highlighting David and Laura's selflessness at the darkest of times.
Friend Kayleigh Hope added on the page itself: "Whilst Miles was in hospital, even with everything they faced as a family, Laura and David knew they wanted to do something to make a difference and didn't want another family to be in a situation like theirs.
"So even whilst their little boy was so poorly they thought of others and decided to fundraise for more readily available equipment and to fund the NIDUS machine which was a huge part of Miles's journey, they had a huge success and were beyond grateful to everyone who donated or shared the post to raise more awareness.
"The money raised for that will solely go towards helping others and this is why I wanted to get behind Laura and David and give something back."
To support the family, click here.
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