Parents will not give up on son

NICOLE MATHEWSON
Last updated 05:00 22/07/2013
Daniel Tobin

One-year-old Byson Bennett was born with hydrocephalus and has now been diagnosed with biliary atresia.

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A young couple have not given up hope for their youngest son, despite doctors telling them he is unlikely to live to see his second birthday.

One-year-old Byson Bennett, from Christchurch, was born with hydrocephalus - known in layman's terms as "water on the brain".

Doctors inserted a ventriculoperitoneal shunt between his brain and stomach a week after he was born to help drain the excess fluid, but soon after he was also diagnosed with biliary atresia - a rare liver disorder affecting the tubes that carry bile to the gut.

The condition caused him to be severely jaundiced and left him needing a liver transplant, but doctors at Auckland's Starship children's hospital said they would not do it because they could not guarantee it would improve his quality of life.

"When they said he couldn't have a liver transplant, that was pretty much the end of it," mum Jasmine Bennett, 20, said. "It's just waiting [now]."

Bennett said Byson was possibly the only child in New Zealand to be suffering from both hydrocephalus and bilary atresia.

The two conditions left him unable to sit up or hold his head up on his own, and it was not known how well he could see or hear.

He could not eat, instead gaining sustenance through a tube in his stomach, but was a "happy" baby, who loved to play in the ball pit at Chipmunks Playland.

"He's just a happy little boy . . . but he gets really frustrated that he can't do anything."

Bennett and her husband, Rikki, 23, have two older children - Oceanah, 2, and Julius, 4 - but none of their other family members have health problems like Byson and the cause of his conditions are unknown.

Byson's aunt, Renee Bennett, said the family had been through a tough time.

"Rikki and Jasmine try to handle it with everything they have, but it does take a lot out of them.

"They do break down. We love Byson so much."

The young couple had been together for six or seven years and decided to get married after being told Byson might not live to see his second birthday.

"We thought we'd do it so he could be a part of it," Jasmine Bennett said.

Now, the family were waiting to see if doctors would reassess Byson's eligibility for a liver transplant.

"He's picked up so much over the last few months. We think it's unfair they wouldn't do the liver transplant because of his quality of life, but they don't know his quality of life."

Bennett said she hoped to develop a network for other parents in a similar situation.

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