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Faces of Transplant: Transplanting our smallest and youngest patients

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SALT LAKE CITY, Utah, (News4Utah) — As we wrap up our five-part series on the ‘Faces of Transplant’ we take a look at the youngest and smallest transplant patients.

Primary Children’s Hospital in Salt Lake City is the sole transplant center for children receiving organs in Utah.
Ten-year-old Isabel loves art, dance and going to school. Her seemingly normal, active life came to a sudden stop about a year ago.

“She was complaining about a stomach ache,” said Sarah Guzman, mother. 

Three months of agonizing hospital visits, misdiagnosis and a battery of tests, would come down to a rare liver disease. Isabel would need a replacement.

Isabel’s diagnosis was complicated with having graves disease: an autoimmune condition.

“It was difficult. It was really really difficult,” said Guzman. 

“One of the biggest challenges is getting organs the appropriate size and a match for that child,” Dr. Kyle Jensen, University of Utah School of Medicine, Primary Children’s Hospital Hepatologist

The team at Primary Children’s Hospital perform these intricate surgeries, often times, with children much smaller and younger than Isabel.

“The biggest need for liver transplants is under 2 years old. We have an  amazing transplant team,” Linda Book, University of Utah School of Medicine, Primary Children’s Hospital Medical Director of Pediatric Liver Transplant Program. 

Surgery may be four to six hours but it takes an entire team, partners, and hours more coordinating a pediatric transplant.

Dr. Manuel Rodriguez performed Isabel’s transplant surgery. He says the liver is the largest solid organ in the body and often times they can divide the liver and save two lives.

Since the organ regenerates the liver grows with the child, and if it’s a living donor, the liver grows back for the donor too. In 2017, Doctors at Primary Children’s Hospital performed 40 pediatric organ transplants which include 20 livers.

Maximizing the organ is essential, especially when the only way to move up the organ transplant waiting list is to get sicker.

“The organ allocation doesn’t always favor children,” said Dr. Rodriguez. 

Isabel’s mother watched her daughter’s health and optimism decline.

“To see her struggle and see her slowly feel like there wasn’t going to be any hope,” said Guzman. 

Isablel’s mom was ready to be a living donor, when this past August, Isabel received a match.

Isabel was in ICU for 2 weeks. She was in a wheelchair, feeding tube and needed oxygen.

Isabel is now getting stronger.  
“There’s a lot of people in the hospital waiting for an organ and I’m grateful for the person who donated a new liver,” said Isabel. 

Isabel is not quite ready to go back to school. She still needs oxygen at night and building up her immune system. But she is dancing and can’t wait to get back to see all of her friends.

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