Alberta baby waiting for liver transplant from mother

Jacob Kohlruss's uneven baby teeth protrude from his constant ear-to-ear grin.

Looking at the 14-month-old, it's hard to believe he's fighting cancer for a second time.

There's an inoperable tumour in the little boy's liver. His only option is a transplant, and early tests are showing his mother, Courtney Kohlruss, is a near-perfect match to donate a part of her liver to her son.

I wanted it to be me as soon as I knew liver transplant was possible for him.- Courtney Kohlruss

"I wanted it to be me as soon as I knew liver transplant was possible for him," Courtney said Sunday in the sunny living room of the family's Leduc house.

"For a mother to be able to give a second opportunity to give life to their child is something really special."

Courtney and Jeff Kohlruss, both 28, were married on Jan. 31, 2015. Since the birth of their son on Nov. 4, 2015, theyspend their time together at home when they're not at the Stollery Children's Hospital because his immunity is so low.

Cancer diagnosis 'indescribable'

Jacob has a rare genetic conditioncalled Simpson-Golabi-Behmel Syndrome. There's not a lot of information on it and only a few hundred cases have ever been diagnosed. The most prevalent complication is gigantism, which can mean overgrown organs and an increased risk of certain childhood cancers.

When Jacob was eight weeks old, doctors found a tumour in his liver.

"It's every parent's worst nightmare to hear something like that," Courtney said. "To get a cancer diagnosis for a baby is something that's indescribable."

At five months, Jacob had surgery to remove the tumour and underwent chemotherapy. In July 2016, he was declared in remission.

Just days before his first birthday, doctors discovered another tumour, one that intertwined with his liver vessels.

Jacob's only option was a transplant and he was eligible for a living donor.

His mother and father immediately got tested to see if they were candidates. Both were matches, but since Courtney is so slender, it's more likely a piece of her organ will fit Jacob's small body.

No guarantees

Before the surgery goes ahead, Jacob has to go through more testing.

"There's still a lot of variables that could change the way that this is going to go," Courtney said.

"Nothing's a for-sure until we're both in the operating room and they say that everything's a go."

Tentatively, Jacob could receive the transplant in March.

"It's about staying as positive as possible in a bad situation," Courtney said.

Given her son's health, she didn't returnto her retail job after her maternity leave. More recently, her husband stepped away from working as a pipefitter.

"We wanted to wait and see how things were going to go and try to spend as much time as we could as a family," Courtney said.

"We both believe that Jacob will beat this and be OK the best thing that we can do for him is be happy and be supportive and continue to believe that in years he'll be able to look back on this and see what he survived.

"I want him to grow up and to know how strong and how brave he was and beat this and be able to move on and have a normal childhood."

roberta.bell@cbc.ca

@roberta__bell