Rare syndrome leaves baby unable to sleep without a machine
IMAGINE being told your newborn baby would need to be hooked up to a machine for the rest of his life to prevent him from dying in his sleep.
This was the harrowing news received by Noosa parents Summer Wallbank and Tom Howe after their baby Archer was diagnosed with an extremely rare condition called Haddad's Syndrome.
The condition is a combination of Central Hyperventilation Syndrome and Hierchsprung disease, with the former affecting his breathing and the latter having an effect on his bowel movements.
As a result of the syndrome, Archer cannot sleep without a ventilator life support machine helping him breathe ,as without it he would become unconscious and no oxygen would be delivered to his brain.
"I had a really good pregnancy and had no idea that anything was wrong," Ms Wallbank said.
"Within a couple of minutes of him being delivered he went limp and stopped breathing and the doctors had to resuscitate him.
"The next time I saw him he was being transported by Careflight to Brisbane."
Doctors initially diagnosed Archer with Hierchsprung disease and while repairing his bowel they discovered that he also had Central Hyperventilation Syndrome.
"In quite a few cases they go hand-in-hand but only one in two million babies have the syndrome," Ms Wallbank said.
"He had to have a tracheotomy fitted so he can be attached to the ventilator to breathe.
"He can breathe okay when he is awake but when he falls asleep his automotive response cuts out so the machine keeps him alive."
The now four-and-a-half month old has spent the entirety of his life in hospital but his parents hope they will soon be able to bring him home.
The only problem is they no longer know where home is.
"Archer will need access to carers and the program run by Queensland Health only services a 40km radius of the hospital," she said.
"We thought we would be able to go home but turns out we have to move.. Just when we got our heads around Archer's condition they then threw this on us.
"We still want to come back to the Coast though and will be fighting to get back."
Ms Wallbank and her partner have both quit their jobs and are packing up their lives in Noosa to make the move to Brisbane.
To help with the costs of the relocation and the full-time care needed for Archer, their family have started a GoFundMe page and are raffling off a boat to raise money.
Almost$16 000 has been raised so far.
"I never imagined it would take off like that," she said. "We are so thankful because it will help us give Archer a better quality life."
To donate visit the ARCHER HOWE Fundraiser GoFundMe page.