Rare disease almost kills 2 Toowoomba newborns

A RARE disease left two Toowoomba newborns fighting for life and sparked a warning for new parents to be on the lookout for symptoms.

Baby Tinley Beutel fell ill about three weeks after she was born and was rushed to Brisbane's Lady Cilento Children's Hospital where she was diagnosed with parechovirus.

After a period in intensive care, Tinley is back at home with her brother and sister.

Baby Tinley Beutel at Lady Cilento Children's hospital in Brisbane suffering from parechovirus.
Baby Tinley Beutel at Lady Cilento Children's hospital in Brisbane suffering from parechovirus. Photo Contributed

"It's a wait-and-see game. The doctors don't know the disease well enough to know what the future holds," she said.

"It's very scary. Every time she does a sneeze now I freak out.

"Her medical records are being used for medical journals because it's so unknown."

Tinley was born on December 2 at St Vincent's Hospital via caesarean, and after being sent home healthy, was rushed to the Toowoomba Hospital on December 18 when she became lethargic and was not eating.

ALL TOGETHER: Mother Skye Browne with baby Tinley Beutel (centre) with Tinley's brother Rykar (left), sister Taylor (right) and dad Jason Beutel.
ALL TOGETHER: Mother Skye Browne with baby Tinley Beutel (centre) with Tinley's brother Rykar (left), sister Taylor (right) and dad Jason Beutel. Photo Contributed

Her grandmother Donna Browne said Tinley was put on respiration and given spinal taps.

"She has to go down for more MRIs. They thought it was meningitis or a twisted bowel, and she had an inflamed pancreas," she said.

"We almost lost her."

Around the same time, baby boy Lincoln Elwell suffered from almost identical symptoms.

LITTLE FIGHTER: Baby Lincoln Elwell fights for life at Lady Cilento Children's Hospital.
LITTLE FIGHTER: Baby Lincoln Elwell fights for life at Lady Cilento Children's Hospital. Photo Contributed

More than one month later, he is fighting for life in intensive care at Lady Cilento Children's Hospital.

He has been diagnosed with the more common disease enterovirus, a group of viruses that includes parechovirus, confirmed via a lumbar puncture at St Vincent's.

The two families have contacted each other to offer support and share what is known about the disease which has no vaccine.

"We were told a few times he might not make it, that he might die," Lincoln's mum Zoe Elwell said.

"It is rare that it attacked Lincoln's heart, because this disease is not usually as severe. It's all your worst nightmares at once.

LITTLE FIGHTER: Toowoomba baby Lincoln Elwell before he fell ill.
LITTLE FIGHTER: Toowoomba baby Lincoln Elwell before he fell ill.

"A first-time mum might not recognise the signs, but people need to be aware that if your baby isn't looking well, you need to get them to a doctor."

A Darling Downs Hospital and Health Service spokeswoman said symptoms of parechovirus included high temperatures, diarrhoea, abnormally rapid breathing, severe irritability or appearing to be in pain, rashes or skin discolouration and jerking movements.

Babies under three months are more likely to suffer severe symptoms of the virus, which is spread via respiratory droplets, saliva and faeces.

St Vincent's Hospital director of clinical services Jeff Potter said the hospital was aware of Queensland Health advice about a recent increase in parechovirus seen at the Gold Coast University and Lady Cilento hospitals.

"We have alerted our maternity service, special care nursery and children's ward about the increase in human parechovirus cases and our staff are vigilant about escalating any case that may indicate signs of this group of viruses," he said.

Lady Cilento's Infection Management Prevention Service confirmed between January 1 and December 28, 2015 there were 22 cases of parechovirus at the hospital.


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