'I refuse to sit around and wait for her to die': Joburg dad's desperate quest to find a liver for his daughter

By Kirstin Buick
13 September 2016

Little Divya is living on borrowed time.

They hadn't planned to have any more children.

But when Cindy and Dhenesh Singh from Midrand in Johannesburg discovered they were expecting their third child they were over the moon.

They welcomed a beautiful baby girl in January this year and named her Divya Ashlee after Cindy's brother who passed away in a car accident on his wedding day in 2013.

Dhenesh (40) and Cindy (35), who also have two sons, Devesh (10) and Dhevan (4), were overjoyed to have their first daughter.

"She was chubby, bubbly – she seemed so healthy," Dhenesh recalls.

Divya soon after her birth. PHOTO: Supplied Divya soon after her birth. PHOTO: Supplied

But two weeks later the Singhs realised something was wrong with their little girl. Divya's skin had a yellowish tinge, she was throwing up her milk and losing weight fast.

An agonising time of doctors' visits and tests ensued. Eventually a liver biopsy confirmed a heartbreaking diagnosis: little Divya had biliary atresia, a rare condition in which the bile duct that drains gall from the liver to the small intestine is narrowed or even completely blocked.

Eventually Cindy and Dhenesh's baby girl's liver will fail. Her condition is life-threatening – unless she receives a new liver.

With the help of the Wits Donald Gordon Medical Centre's transplant unit in Johannesburg – specialists in the field of liver transplants – Divya was added to the national transplant list.

Cindy and Dhenesh with all their children, Devesh, Dhevan and Divya. PHOTO: Supplied Cindy and Dhenesh with all their children, Devesh, Dhevan and Divya. PHOTO: Supplied

But there are thousands of names on this list and it's rare that people will opt to donate their loved ones' organs when they die let alone that they might be usable in a transplant.

In the meantime Divya is in and out of hospital regularly and has to be fed through a feeding tube in her nose. Cindy, an HR administrator, had to give up her job to give Divya round-the-clock care.

"She's living on borrowed time," Dhenesh explains, the strain evident in his voice. "She gets worse every day."

Divya has good and bad days - but she's getting progressively worse. PHOTO: Supplied Divya has good and bad days - but she's getting progressively worse. PHOTO: Supplied

So Dhenesh decided to take matters into his own hands.

"I'm not going to just sit around and wait for my daughter to close her eyes in front of me."

There's another option for Divya – a living donor.

Liver transplants can also be done using a piece of a living person's liver. Using a procedure called a liver allograft (see below), surgeons would be able to place that piece of liver in Divya's abdomen and within about eight weeks the donated piece of liver should grow to a normal size.

It's certainly not the first time the surgery has been performed in SA. In 2013 Durban's Connor Mollison (then nine months old), who also suffered from biliary atresia, became the youngest South African to have an organ transplant involving a living donor – his mother.

Annabel (then 37) donated a piece of her liver the size of a man's hand to her son.

After the surgery Annabel, a GP, told YOU Connor received the part of her liver on the same day it was removed. “It wasn’t that painful because I was under heavy sedation for four days in intensive care. I was very worried about Connor during this period but everyone assured me he was doing fine.

“I’ve got a long scar under my ribs from one side to the other, just like Connor. It’s painful but I’m just happy we could do something to help our child.”

connor

For little Divya, Dhenesh and Cindy would undergo the operation in a heartbeat but neither of them is a blood-type match.

In Divya's case the donor would need to be O-positive or -negative blood type, be between 18 to 50 years old, have a BMI (body mass index) of 30 or below, and be healthy with no medical conditions.

The family have set up a Facebook page to spread the word, hoping a potential donor for Divya will come forward.

If the above criteria were met, Dhenesh explains, the donor would need to go for further blood tests and scans and consultations with doctors.

"This can be done within two days," he says. "The donor portion of the liver that's taken will grow back within two to three weeks and the person can live a healthy life."

The operation

liver diagram

Step 1 The left lateral section (330 g) of the donor's liver is removed. The liver is connected to the rest of the body via a portal vein, hepatic artery, hepatic vein and bile duct.

Each of these splits into right and left vessels before joining the liver. The vessels on the left are removed together with the piece of the donor’s liver so they can later be joined to those in the recipient’s body.

The liver is regenerative and the donor’s will grow back in four to six weeks.

Step 2 Special preservative liquid is flushed through the vessels of the liver and it’s stored at 4 °C until the recipient is ready to receive it. The liver can be stored for up to 12 hours because the metabolic rate is lowered so much the organ doesn’t need oxygen or nutrients, Professor Jean Botha of Wits University, who led the surgical team who performed Connor's operation, told YOU after the operation.

Step 3 The recipient’s portal vein, hepatic artery and hepatic vein are stitched to the donor liver. The liver then turns bright pink.

According to the David Gordon Medical Centre, a living-donor liver transplant isn't meant to replace conventional organ transplant procedures "but instead to serve as an alternative to those who can't afford to be put on the waiting list".

"In the same way the success of these surgeries will hopefully motivate individuals to consider this option as it will take significant pressure off the organ donor waiting list."

If you'd like to get in touch with the Singhs to help go to the Facebook page they've set up for Divya.

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