Liver transplant saves young Moose Jaw boy's life

A five-year-old Moose Jaw boy was only expected to live for another two years unless he received a liver transplant.

Kole Cooper and his twin brother, Kage, were born with urea cycle disorder, a rare genetic disorder caused by a mutation that results in a deficiency of one of the six enzymes in the urea cycle, which removes ammonia from the blood.

When the body breaks down protein, the waste is turned into ammonia, but the twin's livers were not able to remove ammonia from the bloodstream. 

Ammonia can accumulate and reach the brain, causing irreversible brain damage, coma or death.

"If [Kole] gets a cold or a flu, your ammonia levels go up, so basically he can go from functioning as a normal five-year-old to being in a coma in a 30 minute process," said Crystal Kober-McCubbing, Kole's adoptive mother.

"The coma is scary and that's what happened to Kole's brother." 

About half of children with urea cycle disorder do not live to age five, according to Kober-McCubbing. Kole's brother, Kage, died in March 2015 at four-years-old. 

It's not fair that a five year old has to suffer because he comes from a bad home background.- Crystal Kober-McCubbing

Kole needed a liver transplant to survive. He is currently in Toronto at the Ronald McDonald House recovering from transplant surgery.

"To get one this fast, you will not believe how ecstatic we were, especially because just the weekend before he got the transplant, Kole actually ended up in the hospital in a coma," said Kober-McCubbing.

First step

Getting a liver transplant for Kole may have not taken as long as Kober-McCubbing expected, but it wasn't an easy process.

After Kole's brother died, Kober-McCubbing and her husband, John, pushed to get guardianship of Kole.

"The first step in getting him a liver transplant was getting him into a stable home with us because we were told that as long as his social situation remains the same, he would never get a liver transplant and to me that's not fair," said Kober-McCubbing.

"It's not fair that a five-year-old has to suffer because he comes from a bad home background." 

Kole's adoptive father is staying with him in Toronto while Kober-McCubbing cares for her three eldest children in Moose Jaw.

Trying new foods

Before the operation, Kole had to limit the amount of protein he consumed because it would cause his ammonia levels to rise.

He had to avoid meat, dairy, and bread and eat fruits and vegetables in moderation. He took a special metabolic cocktail four times a day through a feeding tube directly into his stomach.

"To have a normal meal at supper with us wasn't possible. So trying to tell a five-year-old that if he really likes something he can't have it anymore, because he can only have five grams of protein a day was really hard," said Kober-McCubbing.

Kole is slowly being introduced to new foods. Kole's medication will decrease from seven doses a day to one a day due to his transplant, according to Kober-McCubbing.

"Our battle right now is to get him to eat things," said Kober-McCubbing.

She says barbecue ribs and peanut butter are some of Kole's favourite foods he has tried so far.