It had been exactly three years since their daughter’s shock diagnosis when the good news finally came through – a liver was available from a suitable donor.

Shanitha-Lee de Jager (21) would finally receive the life-changing operation she and her parents, Deon and Rojeanne, had desperately been praying for.

Shani, as her parents call her, was diagnosed in 2016 with Budd-Chiari syndrome, a rare and incurable disease that occurs when a blood clot narrows or blocks the hepatic veins that carry blood from the liver. 

Her parents and her younger sister, Deonè (17), were ruled out as donors after tests showed they were incompatible – so to hear she’d finally get a new organ was a beacon of hope for the family.

But instead of celebrating a new lease of life for their child, the couple is mourning her death.

Shani died on the operating table – and her heartbroken parents had to be ferried to her funeral in an ambulance after they were involved in a serious motorbike accident shortly before their daughter’s surgery.

It’s been a fraught time for the De Jagers, who tell us their tragic story from the Intercare Tyger Valley Hospital in Bellville, Cape Town, where they’re still undergoing rehabilitation. A long road to recovery lies ahead, they say – physically, yes, but especially emotionally.

Rojeanne attended her daughter’s funeral in a wheelchair; Deon was wheeled into church in his hospital bed.

“I’d have loved to at least have carried my daughter to her grave,” he says through the tears. “But I couldn’t even do that.”

The couple is telling their story to raise awareness of the importance of organ donation. If more people become donors because of what Shani went through her death won’t have been in vain, her mom says.

Shani’s illness came like a bolt from the blue.

At her matric farewell in September 2015 she was fighting fit but in December that year, she started having terrible stomach pains.

“She was throwing up a lot but we thought it was stress because of the matric exams,” says Rojeanne, a business analyst for a life insurance company. 

The pain and nausea intensified over the next month and the couple took Shani from one doctor to the next in search of answers.

“They treated her for everything from stress to depression and a spastic colon.” In February 2016 one doctor finally suggested they do an upper gastrointestinal endoscopy, where a scope is inserted in the body.

The results were devastating: She had Budd-Chiari syndrome.

“I was hysterical,” Rojeanne recalls. “You have a daughter who’s always been healthy and suddenly there’s this incurable disease.”

Shani’s deterioration was rapid. With blood flow from her liver to her body cut off, thick varicose veins formed in her neck, on her arms, legs and torso.

She was in unbearable pain and was forced to drop out of Prestige Academy where she was studying event management.

Shani had to have blood-thinning injections and was put on medication to support her liver function and control the swelling of her belly and feet caused by water retention.

“Doctors told us there wasn’t much more they could do for her but we didn’t accept that. We said, ‘No ways,’ ” says Deon, a production manager for a company that makes yacht sails.

Shani was referred to Wits Donald Gordon Medical Centre in Johannesburg where a team that specialises in liver disease treated her.

Doctors were hesitant to perform a liver transplant because tests showed she’d have only a 20% chance of survival.

For two years Rojeanne and Deon flew back and forth between Cape Town and Johannesburg with Shani and in October last year they insisted their daughter be put on the transplant list.

“I told the doctors that if the transplant didn’t work at least we tried,” Rojeanne says.

The couple and Deonè all wanted to become donors – unlike other organs, only a portion of a liver needs to be donated and a donor’s liver can regenerate.

But because they were unsuitable the hunt was on for a compatible liver.

Shani moved to Joburg as she had to be at the hospital within two hours should a liver become available.

First she stayed with family, then friends and eventually two weeks before the transplant she lived in the retirement home run by the family’s church, which has locations across the country.

Comforted by the fact their daughter was well taken care of, Deon and Rojeanne decided to go away for the weekend, heading off on Deon’s motorbike to a guesthouse in the town of Montagu in the Western Cape to celebrate their anniversary and Valentine’s Day.

But on the way back disaster struck.

“A guy towing a trailer pulled out in front of us,” Deon says.

The impact sent the bike soaring into the air. Deon fell off but Rojeanne managed to stay on the bike before it crashed.

Rojeanne fractured her right foot as well as a bone in her knee and dislocated her shoulder. Deon spent four days in a coma.

He broke his right collarbone, fractured his pelvis in four places, broke eight ribs and one of his lungs collapsed. It was touch and go for Deon for a while and once it became clear he’d pull through doctors said it would be months before he’d be on his feet again. Then a few weeks later the call came through: a liver had been found for Shani.

On 1 March she was wheeled into the operating theatre. Rojeanne temporarily discharged herself from hospital and flew to Joburg to be by her daughter’s side.

“I spent an hour with her before she was wheeled in. She was smiling but I think she knew she wasn’t going to make it.

“While I’d been flying she’d sent me a message with all the passwords to her phone. So I think in her mind she knew.”

After several hours a surgeon emerged from the operating theatre to break the news: Shani had died.

“I was heartbroken,” Rojeanne says tearfully. “I kept thinking maybe I should’ve come earlier. Maybe I should have said more, done more.”

Two whirlwind weeks followed in which Rojeanne, who readmitted herself to hospital, made preparations for the funeral in between having physiotherapy, supporting Deon and ensuring Deonè was okay.

Deon’s parents, Gerrie and Hetty de Jager, came to Cape Town from Oudtshoorn to care for their grandchild while her parents recover.

“Shani touched so many people,” Rojeanne says. “People who’d never prayed before started praying because of her. People who didn’t know about organ donation are now aware of it.

“If that was God’s plan for Shani’s life, if that was her purpose, then she definitely achieved it. Maybe that’s why He took her away from us.”

(Pictures: Supplied/Misha Jordaan)