Most first time parents are able to experience the joy of taking their baby home for the very first time.
But Summer Wallbank and Tom Howe, who welcomed their bundle of joy Archer at the Sunshine Coast University Hospital four and a half months ago, are yet to experience what many take for granted.
“A minute after birth he stopped breathing and had to be resuscitated and was unable to breathe by himself,” Ms Wallbank told Yahoo7.
Within his first few hours Archer was flown to Brisbane on a Careflight and was later diagnosed with a rare congenital disorder called Haddad Syndrome, which is a combination of congenital central hypoventilation syndrome and Hirschsprung disease.
“He has to be ventilated whenever he goes to sleep,” Ms Wallbank explained.
Due to the syndrome, which impacts the central and autonomic nervous system, little Archer needed a tracheotomy to connect to the machine, and has to be linked to it to be able to breathe when he falls asleep.
A Gofundme page set up by other family members says: “Without it, Archer will become unconscious and (have) no oxygen to brain”.
Also due to the Hirschsprung disease, which causes chronic constipation, Archer has a colostomy bag.
This will be reversed but it is believed he will also have lifelong bowel problems.
“You go and have a baby and you never come home and your whole life just goes kaboom,” Ms Wallbank said.
“It’s been a rollercoaster to say the least.”
The parents were told Archer would have to be in hospital for the first eight to twelve months of his life, as he will be sleeping often while growing through this time.
“We’d come to terms with that (the diagnosis), but dealt another blow when they said we couldn’t come home,” Ms Wallbank said.
Both of them have had to quit their jobs and are about to move their whole lives from the Sunshine Coast to Brisbane so they can be part of an at home ventilation program, which they say is only funded if you live within a 40 kilometre radius of the hospital.
Mr Howe is looking for work at the moment but Ms Wallbank will not return to work as she is now Archer’s full-time carer.
“It’s all been a pretty full on situation we’re in,” Ms Wallbank said.
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A Gofundme page was set up by other family members to help with the young family’s relocation costs, to raise money for a CO2 monitor, a generator, portable batteries for a mobile ventilation machine and once they do bring Archer home they will need help with costs for an overnight carer.
The parents are hoping that eventually they will be able to move back to Noosa with their baby.
“That’s our ultimate goal is to be able to come home with our boy,” said Summer.
Anyone hoping to help the family can donate through the ARCHER HOWE Fundraiser Gofundme page.