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Having the time of her life

Experimental procedure kept child alive till transplant could be done

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Dr. Aneal Khan, who led the team performing the liver-cell transplants, visits with Nazdana and her mom.

TREVOR ALBERTS / SUBMITTED PHOTO Enlarge Image

Dr. Aneal Khan, who led the team performing the liver-cell transplants, visits with Nazdana and her mom.

Today, Nazdana Jan of Winnipeg is a healthy little girl.

But the toddler, who turns two next month, has travelled a rocky road after being born with life-threatening liver problems.

One day after Nazdana was born on Aug. 10, 2012 at Women's Hospital in Winnipeg, her father, Johar Ali, had no idea she had a life-threatening condition.

"She was a normal baby... she was feeding nicely," Ali said.

But two hours after being brought home, Nazdana became unconscious.

'It was a very difficult decision, because it was experimental. But I had no choice' -- Nazdana's dad Johar Ali

Her parents immediately took her to the emergency room at the hospital in Portage la Prairie, where the family was living at that time.

The child was transported to Children's Hospital in Winnipeg, where doctors told the immigrant family from Pakistan that Nazdana suffered from a urea cycle disorder (UCD). Fewer than 50 babies per year in Canada are born with a UCD.

Normally, ammonia produced by the body is converted to urea, which gives urine its yellow colour. But Nazdana's body wasn't able to convert the ammonia it was producing, causing it to build up. Ammonia, if it builds up long enough in the body, can lead to brain damage and death. Most babies born with UCD die within two weeks, if left untreated.

The only way to keep Nazdana alive was a liver transplant, but at only two days of age she was too young to receive one.

So her doctors proposed an experimental procedure for the Winnipeg infant: Instead of transplanting a whole liver, doctors at the Alberta Children's Hospital in Calgary would infuse her with liver cells. Dr. Aneal Khan, who led the team performing the transplants, said the procedure would keep Nazdana alive until she was old enough to get a transplant.

"(The procedure) buys time. It protects the brain," Khan said.

It wasn't an easy decision for Ali to make. On one hand, the procedure was experimental. But on the other, without it Nazdana's ammonia levels could rise to dangerous levels, even with medication, he said.

"It was a very difficult decision, because it was experimental. But I had no choice. I couldn't leave my daughter with the risks (of doing nothing)," he said.

Khan said there are risks associated with the liver-cell transplant procedure, as it is a complicated one to perform. Ali decided it was the best chance for his daughter, despite those risks.

Nazdana was transported to the Alberta Children's Hospital and over the course of six days in November 2012 she was given the liver-cell transfusions. Khan said the procedure accomplished what it had intended.

"She went a year without a single rise in ammonia (levels)," Khan said.

After 18 months waiting for a liver, Nazdana received a full liver transplant last April in Toronto. With the new liver, Khan said her disease is history.

"She can go about her life and live a normal life as possible," he said.

Ali said he was thankful to everybody involved in Nazdana's care and the procedures that helped her.

"She is completely normal. We are very happy for that. We are grateful to all the people, the doctors, the nurses, the social workers, that helped with that," he said.

oliver.sachgau@freepress.mb.ca

Republished from the Winnipeg Free Press print edition July 28, 2014 B1

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