Baby Nazdana Jan was born with a urea cycle disorder, a rare genetic disease that causes a build up of ammonia in the body. Her family recently immigrated to Canada from Pakistan. Her father explained how they discovered she had a problem.
“At first she was eating, you could say feeding very well. Then she stopped. It was terrible and it was a really, really, hard time. And I can’t explain it, no words,” he said.
She is being treated at the Alberta Children’s Hospital. The best solution would have been a liver transplant, but it would have been a tricky procedure in such a young baby. If left untreated the disease would lead to brain damage and death.
The solution the hospital decided was a liver cell transplant, the first to be performed in Canada and, as Dr. Arneal Khan pointed out, a rare operation around the world. About 20 have been performed mostly in Germany and the United States.
“I found the status quo was not satisfactory for the lives of the patients because most of our patients who even survive through childhood and adulthood, they have neurological injury,” he explained.
So the doctors performed a series of liver cell transplants, with the healthy cells keeping the baby’s ammonia levels down. The aim is to stabilise those levels until Nazdana Jan is big enough for a liver transplant. She is currently doing well and stayed only seven days in hospital.
Nazdana’s father said he can’t believe how quickly his daughter has recovered. “She doesn’t look like a sick baby, she looks like a normal baby,” he said.
Dr. Arneal Khan concluded: “It’s a very big thing because even if one child can be helped in that way, I think the goal has been achieved.”
Ammonia is produced naturally in the human body. People with urea cycle disorders have a reduced ability to convert ammonia to urea, which is harmless. The condition is incurable.
Baby Nazdana is now being monitored and, because the cell transplant is akin to a full organ transplant, is on anti-rejection drugs.
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