Owen Hill Davie has seen many struggles in his life, but on his fourth birthday last month he was all smiles and laughing as he sat on his mother's lap.
Stephanie Beharrell's pregnancy with Owen four years ago was nothing short of perfect.
"Everything was textbook," she said.
A few days before her due date, however, Owen flipped around into a breach position. The doctors were concerned there wasn't enough room to flip him around so they scheduled a cesarean section, Beharrell said.
That was when the little boy's troubles began.
"When they pulled Owen out he was blue," she said, adding it took doctors some time to get him breathing.
He bounced back quickly, Beharrell said, and within 12 hours his breathing problems appeared to be gone. Owen spent more than two weeks in the neonatal intensive care unit, but other than having to establish some feeding skills and gain some weight, everything appeared to be fine, she said.
After 16 days in hospital, Beharrell and husband Peter Hill Davie brought their baby boy home. Two days later, Beharrell took Owen to see the family doctor for a routine check up.
She said the doctor took one look at Owen and, concerned he was having breathing issues, immediately sent them to B.C. Children's Hospital. At less than a month old, Owen spent another week in hospital where he was assessed by a number of doctors.
He was diagnosed with severe reflux and extremely low muscle tone, doctors discovered that his skull plates were overlapping and the genetics team told the new parents their son appeared to have CHARGE syndrome -a pattern of lifethreatening birth defects. After a week, Owen was discharged once again and his parents brought him home to the family dairy farm in Ladner. Hill Davie is a third generation farmer in Ladner and Beharrell is the fourth generation of her family in the community. Her grandparents had a dairy farm just up to the road from where the family now lives.
As the new parents tried to settle into life with a baby, Owen continued to have breathing problems.
Over the next six weeks, they had to call for an ambulance six times, Beharrell said, and at least twice a week they drove Owen to the hospital themselves.
Each time, Owen checked out fine and they were sent home.
In early June 2011, Beharrell was feeding Owen when, once again, he started turning blue. She said she immediately sat him up and his colour changed back to normal. Thinking maybe she was seeing things, she went back to feeding him and it happened again.
Concerned, Beharrell said she loaded Owen into the car and drove to Children's Hospital and, again, after four hours doctors were ready to send them home. Owen's oxygen levels were fine, they told her.
Convinced that something was wrong with her baby, Beharrell begged them not to discharge him.
"I was really, really upset," she said.
It was time for another feeding, so Beharrell warmed up a bottle and began feeding Owen and his oxygen level immediately dropped from 100 per cent to 40 per cent.
Owen was rushed to the intensive care unit where his oxygen levels continued to decline.
"Over the next 48 hours they tried to remain positive but they prepared us that he was having extreme difficulty breathing," Beharrell said.
One of the nurses managed to find a position for Owen that helped with his breathing but every time he was moved out of that position, his oxygen levels would drop again.
Owen would spend the next 238 days in the ICU. During that time, the blue-eyed little boy was diagnosed with a long list of problems, including a smaller than normal skull, a
blocked nasal passage and small windpipe, one lung larger than the other, sleep apnea, obstructive apnea, a heart defect, bowel and urinary issues, and hip dysplasia.
A test for CHARGE syndrome came back negative and the family is currently waiting for results from further genetic testing.
After almost eight months in hospital, Owen was sent home - still with no official diagnosis.
In his four years he has had 11 surgeries, including four already this year, the most recent in February to try and correct the hip dysplasia.
He has three or four more scheduled for this year once he has recovered from the most recent one.
He cannot walk or talk yet and can't sit up without assistance. He can't eat yet and still gets nutrition via a tube in his stomach.
At night he must be hooked up to two machines that ensure he is breathing properly.
Owen needs constant monitoring, Beharrell said, because if his head falls into the wrong position, it obstructs his breathing.
Beharrell has never been able to return to work and with Hill Davie working upwards of 15 hours a day on his family's farm, she is left to care for Owen and one-year-old Oliver on her own.
While some of the equipment needed is provided, the couple is left to pay for the rest and has started an online crowdfunding campaign to help cover the cost of renovations and equipment to make their home more accessible and improve Owen's quality of life.
"We know we will eventually be bringing Owen in and out of the house in a wheelchair," she said.
Beharrell said the couple started saving money for the renovations, but when they looked into getting them done they discovered they were much more than they expected.
They are planning on upgrading to a wheelchair accessible van and would like to pave their driveway and install ramps to the front door and back deck.
The goal of the campaign is to raise $20,000. So far, donations total more than $3,600. Beharrell said she had another $70 dropped off from a stranger who had contacted her through the page after her three-yearold son wanted to donate his birthday money.
"We are so overwhelmed and so grateful for this community of ours," she said.
For more information, or to make a donation, visit www.youcaring.com and search for Owen Hill Davie.
