A toddler who was taken to hospital for suspected teething issues was diagnosed with an ‘extremely rare’ life-threatening illness that affecting only one in five million people.
Eight-month-old Henry Norton, who lives in Albury, NSW with parents Craig and Melissa and brother Lachlan, was diagnosed with atypical haemolytic uremic syndrome (aHUS) this month.
The genetic disease can cause abnormal blood clots to form inside vessels in the kidneys – potentially restricting blood flow.
The illness which affects one in five million people and has only been detected in 14 people in Australia can lead to kidney failure if left untreated.
Henry’s mum thought her ‘typically happy baby’ was having teething problems over the Easter weekend after he wouldn’t take liquids.
Henry’s mum thought her ‘typically happy baby’ was having teething problems over the Easter weekend after he wouldn’t take liquids (pictured, Henry)
Eight-month-old Henry Norton (pictured, with mum Melissa) was diagnosed with atypical haemolytic uremic syndrome (aHUS) at hospital
But when his condition didn’t improve and he started vomiting she rushed him to the emergency department at the Albury-Wodonga Health Hospital.
Hospital staff initially sent the family home telling them he was just dehydrated but Ms Norton returned the next day worried about her son’s worsening condition.
‘Henry was extremely pale, refusing to eat and had reduced and very dark brown urine as well as being very lethargic,’ Ms Norton told Daily Mail Australia.
The boy’s kidney’s were failing so hospital staff placed a tube down his throat, allowing him to breath and advised he needed to go the Royal Children’s Hospital in Melbourne.
He also had to be put into an induced coma to stabilise his heart rate.
Ms Norton said she and her husband were ‘literally pacing the floor’ at the hospital while staff fought to stabilise the boy so he could fly to ICU at the Melbourne hospital.
‘I was really scared, I honestly thought the worst,’ Ms Norton said.
‘When you’re hugging your baby and taking him into a theatre room and not knowing if he was going to survive this plane trip or not – it was ridiculously scary.’
It was 4am by the time she was flying with Henry in the air ambulance that rushed the pair to the Rosella Ward at the Melbourne hospital.
The genetic disease can cause abnormal blood clots to form inside vessels in the kidneys – potentially restricting blood flow (pictured, Henry)
‘Henry was extremely pale, refusing to eat and had reduced and very dark brown urine as well as being very lethargic,’ Ms Norton said (pictured, Melissa and Henry pictured after they were sent home by staff at Albury hospital)
It was 4am by the time she was flying with Henry in the air ambulance that took the pair to the Rosella Ward at Royal Children’s Hospital Melbourne (pictured, loading up the air ambulance in Albury)
Ms Norton said she was on autopilot in the aircraft run by the hospital’s PIPER team, after not having slept for 30 hours.
She arrived with Henry in Melbourne and the staff monitored the boy’s vital signs and did tests to eliminate various causes – while her husband drove down to meet her.
‘It was pretty overwhelming – you’ve got 14 people in a room working on your son who’s sedated, it’s quite full on,’ she said.
Henry was woken up after two days where his breathing tubes were taken out which gave Ms Norton the ‘best feeling of being able to hold your baby and give him a bottle’.
His kidneys were still in trouble so she was limited to how much milk she could give him.
She said the family felt really supported by the hospital.
‘They were absolutely incredible with us. They saved our son’s life,’ Ms Norton said.
It was also the first time the couple had been without their elder son Lachlan, 23 months, who they had left in Albury with her parents – so emotions were running high.
Henry was finally diagnosed with aHUS – atypical haemolytic uremic syndrome – a rare illness that causes clots to form in blood vessels.
It is a dire condition that can lead to kidney failure.
The boy also got a blood infection from his femoral line which was put in him in place of a regular IV drip that staff couldn’t use as the boy had become so swollen.
The infection made his heart rate soar to an alarming 207 beats per minute and his temperature grew to a high of 39.6.
The mum said they waited until he was well enough to take home and arrived back in Albury late last week.
From now on Henry needs to go to the Albury hospital twice week for check ups on top of fortnightly four-hour visits to the Melbourne hospital to treat his condition.
Ms Norton said this routine will be ‘forever’ and if the boy develops a cold or gastro, it will likely cause a flare-up which would land him back in hospital again.
The mum has started up a GoFundMe page to help with costs of her son’s care after she was forced to resign from her bartending job.
Henry was woken up after two days where his breathing tubes were taken out which gave Ms Norton the ‘best feeling of being able to hold your baby and give him a bottle’ (pictured)
‘It was pretty overwhelming – you’ve got 14 people in a room working on your son whose sedated, it’s quite full on,’ Ms Norton said (pictured, Henry sedated in ICU)
Funds raised will also support the family with hotel stays during their trips back and forth to Melbourne.
They hope to eventually gain access to Ronald McDonald House accommodation once it becomes available.
Meanwhile, the couple were told by doctors the boy can go on to live a regular life as long as he keeps up the treatment and doesn’t miss a dose.
‘Our goal is for him to live a typical life and to raise some awareness for this disease,’ she said.
The crowdfunding page has so far garnered $4,070 in support.