A baby boy who was diagnosed with chronic kidney disease when he was born three weeks early is one of the country’s youngest dialysis patients.
Little Daniel Cornet has endured eight nerve-wracking operations in the last 10 months – three of which were carried out in the first month of his life alone.
Brave Daniel in hospital
Since his birth on August 8 last year, his kidney function has only ever been at 10 per cent at best and, since November, the brave little fighter has been battling end-stage renal failure.
But he has had a new lease of life after his latest operations, last Tuesday, where he had his right kidney removed and a peritoneal dialysis catheter inserted into his tummy.
He will now be on dialysis until he can get a transplant in three or four years’ time.
Daniel, who has spent nearly half his life in hospital, has previously been so sick, mum Louise Paton, 35, and chef dad, Nick Cornet, 38, from Dunfermline, Fife, wondered if they would “ever get to take him home”.
Louise said: “It’s felt like our lives have been put on hold.
“He’s recovering quite well. He had his right kidney removed last week and is still in hospital just now.
“We’re quite stressed out, tired and emotional. We are really please we got through last week.
Daniel with his mum Lousie
“We knew there were issues before he was born. My 20 week scan showed he had renal pelvis dilation or woollen kidneys which can sometimes resolve itself before birth, but the 30-week can showed the condition had worsened.
“We were confused and it felt like you had been hit by a truck. You had no idea what the future would hold and everything with Daniel has been a waiting game.
“It’s a very worrying time.”
At 35 weeks, Louise had no amniotic fluid left due to Daniel having suspected posterior urethral valves (valves not allowing him to pass urine), as well as Grade 4 kidney reflux.
Grade 5 is the most serious.
Louise said: “After a scan at 36 weeks, it was agreed to deliver him the next week.
“It was really hard. He was taken straight away from us and it was six hours before we got to see him – you wanted to do things like feed him and pick him up but you just couldn’t.
“He’s never very ill but he’s always been really sick. The first three months were touch and go and it was just a total waiting game.
“We asked doctors if we would ever get to take him home – we were always worried he wouldn’t pull through.”
Daniel, who spent the first three months of his life at Edinburgh’s Sick Kids Hospital, was “always covered in bruises” because of all the procedures that were carried out.
He underwent his first surgery at seven-days-old, where doctors created a vesicostomy (bladder stoma) to prevent urine refluxing back into his kidneys.
A week later, he underwent another op to insert catheters into his kidneys through his back and at four weeks had a stent inserted into his kidneys.
Daniel was diagnosed with chronic kidney disease when he was born
He had a gastrostomy and fundoplication in January and then underwent two surgeries in two days in April after an operation to put in a Hickman line was unsuccessful.
Louise added: “He was just tiny. Two operations in two days. That was a hard week. But we also know we were lucky enough to take our boy home.
“We’ve met many parents through our time in Sick Kids that don’t get that chance.”
In May, Daniel had his seventh surgery, where stents were put in both kidneys to help drain them and prevent infections.
Last week’s operation was “50/50” and there was the possibility he would not pull through but Daniel survived and started dialysis last weekend.
Louise said: “He looks amazing. He’s a happy wee soul.
Daniel with his parents Lousie and Nick
“We’ve noticed the difference in the last two days. He’s put on weight and seems to be back to his happy self and has been sick a lot less because the toxins have come down.
“Mentally, he’s at the right age, he will be a bit slow in walking and he won’t eat anything.
“But he’s spending his time getting better and he will catch up. He’s got a really high risk of infection.
“Doctors are quite confident that he will have peritonitis at some point but we’re going to be taught what to look for. We don’t know when we will go home yet – it will be a few weeks.
“The renal nurses have to come and check out the house and we have to have a garden shed put in for his medical supplies.
“The dialysis will keep him stable and he’ll be on it about 10 hours a night until he gets the transplant in about three or four years.”
Daniel also has anaemia and bone disease caused by poor kidney function, as well as an unrelated small hole in his heart which is expected to close up on its own.
Louise admitted that it would be a “long three years” until his transplant, travelling to and from Scotland’s only paediatric dialysis/renal unit in Glasgow.
Louise, who is a sales rep, will soon be Daniel’s full-time carer and friends and family are fundraising to help the family with travel expenses and getting a new car.
To support Daniel visit his fundraising page www.gofundme.com/Danielsdiary.
