Ian Sewell has never known what healthy feels like.
As soon as the 10-month old was born on May 7, his doctor knew something was wrong.
“His poop wasn’t the right colour,” said Auntie Caitlin Lidster.
It was grey, the colour of clay, and quickly turned white.
Tests revealed Ian had a condition called biliary atresia, a blockage in the bile ducts that prevents the removal of waste from the liver, and can lead to liver damage or cirrhosis of the liver – both of which could become deadly.
“Before he was born, we didn’t know anything was wrong,” said Lidster.
Parents Amanda and Spencer thought their third child would be just as healthy as their first two. They had no idea they’d soon be on the scariest, never-ending roller coaster ride of their lives.
In 10 months, Ian has gone through medical procedures that most people wouldn’t even see in their lifetime. He’s had biopsies, 10 surgeries, holes in his colon, fluid and blood in his stomach, bile leaks, a collapsed lung, sections of his bowel removed, a liver transplant, and more.
“It’s frustrating because they don’t know what’s going to happen next,” said Lidster.
A group in Chilliwack are trying to make the process a little easier.
Kevin Pentland and Murray Moore, organizers of Chilliwack’s annual Gospel Blues Festival, have organized a fundraiser where 100 per cent of the proceeds go to the family.
“The parents are living on pins and needles,” said Pentland. “This is too much for the family. They need our help.”
Ian’s surgeries started with a bowel duct replacement at B.C. Children’s Hospital on July 1, not even two months after he was born. But after eight hours on the operating room table, he still wasn’t fixed.
For three months, multiple times a week, baby and parents were back and forth between Chilliwack and Children’s Hospital getting tests done, monitoring Ian’s liver and enzyme counts, making sure he didn’t take a turn for the worse.
In October, his doctors determined he needed a transplant, but because B.C. Children’s Hospital doesn’t do baby transplants, Amanda and Ian had to fly to the Edmonton Children’s Hospital for a week-long assessment.
By mid-December, Ian was put on the liver transplant list.
On Jan. 30, at 10:30 p.m. they got the call.
A liver match was available.
“Everybody sprang into action,” said Lidster.
Lidster and her mom ran to the Sewell’s to take charge of the two older children. Ian and Amanda were rushed to the airport in an ambulance and flown to Edmonton. Spencer flew out the following morning.
On Jan. 31, Ian was back on the operating table.
For nine hours, Amanda and Spencer were left in the dark. They paced the floors, wrung their hands, feared the unknown.
There were no updates. The procedure was extensive and could be touch and go. The doctors did not want premature information getting out.
When the surgery was finally completed, Amanda and Spencer were given a glimmer of hope. The surgery was as successful as could be expected, they were told.
However, there were other complications.
The transplant had put pressure on Ian’s bowels and colon. He needed surgery to remove the scar tissue from his first surgery.
Holes were discovered in his bowels. Feces were escaping into his stomach and at one point even seeping out of his stitches. More surgeries.
“The surgeries were happening almost every other day for awhile there,” said Lidster.
“The surgeons told my sister they’ve never seen a transplant with so many complications.”
Ian was only supposed to be in the intensive care unit for two weeks, but was only moved out last week. He hasn’t had a surgery in just over two weeks now, but his liver numbers are rising – a sign that he’s rejecting the transplant.
“It’s just wait and see now,” said Lidster.
Meanwhile, Spencer isn’t working, the bills are stacking, Ian is expected to be in the hospital for another three months at least, and when he is released, a large portion of his medications are not covered by medical.
“It’s tough,” said Lidster. “He’s going to be on some of these medications for the rest of his life.”
But knowing that Chilliwack is backing the family has made it easier. Amanda Sewell expressed gratitude to her community on the Ian Sewell Fund Facebook page.
“We would like to send a great big thank you for the messages you send us,” she told her 162 followers. “We read them before we go to bed and they give us a boost to continue the next day. We will be forever grateful for all your support!”
The Jamming for Life Concert: A Fundraising Tribute to Ian Sewell is on March 18 at 7 p.m. at First Avenue Christian Assembly.
Chilliwack-based band, Steve Delemar Band and Friends will be performing, as well as the Washington-based band, Firstborn Christian Ministries International.
All donations over $10 will receive a tax receipt.
For more information, contact Kevin Pentland at 604-792-4191 or Murray Moore at 604-819-3009.