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Harold's Story

Friday, May 10, 2013

"Lightning McQueen can go fast," said 4-year-old Harold IV in reference to a character from his favorite movie, Cars. As he ran around his living room one evening in the spring of 2012, it was hard to believe that four months earlier he was in Children?s Hospital of Richmond at VCU?s (CHoR) Pediatric Intensive Care Unit, recovering from a liver transplant.

Less than a month after her son?s April 2008 birth, Michele noticed the whites of Harold?s eyes weren?t as clear as they should be. Harold?s pediatrician ordered blood tests, and Harold was diagnosed with biliary atresia, a congenital condition where the bile ducts do not develop normally. Because bile ducts help remove waste from the liver and carry salts to help the small intestine break down fat, blocked or missing bile ducts can lead to deadly liver damage if left untreated.

Harold, or "P" as he is nicknamed by his parents, Michele and Harold III, was admitted to the acute care unit at CHoR?s MCV Campus and had surgery to remove his gall bladder and attach his small intestine to his liver. The goal was to allow Harold?s liver to drain directly to the small intestine, bypassing the missing bile ducts and gall bladder.

"Three weeks after his surgery, doctors deemed it unsuccessful," recalled Michele. "They thought Harold would need a liver transplant by eight months. Miraculously he did better with more time."

Harold continued to grow and meet most developmental milestones and quickly passed the eight-month transplant mark. (Because of his enlarged liver, Harold developed a distended belly, which prevented him from walking until 20 months.) Although he was admitted to the hospital anytime he had a fever, Harold didn?t get sick as often as doctors expected, coming to the hospital approximately every six months for nearly three years.

By September 2011, after three hospital admissions in seven months, doctors suggested the family consider a transplant. Because the liver is one of the few organs that regenerates itself, Michele and Harold III were tested to see if they could be their son?s donor. Amazingly both parents were perfect matches, but because of the level of care required after a transplant, Harold III chose to be the donor for his son.

"When we checked in to the hospital before the surgery, P knew what was happening," remembered Harold III. "He said, 'hey dad, I'm going to get a piece of your liver.'"

Although Harold IV showed early signs of rejection after the Nov. 14 surgery, his blood work is now that of a healthy 4-year-old. He returns to CHoR for blood tests every two weeks and will continue to take medication to help prevent rejection of his new liver. He is growing physically and has started eating meat, something he used to avoid.

"His energy level is through the roof," said Harold III. "He turned that corner [after showing signs of early rejection]. It?s like he never looked back."

Now the boy who tired easily before surgery rarely stops moving. He loves to eat cheetos, watch the Dallas Cowboys and play with his 5-year-old sister, Elise, in their Chesterfield County home. He also talks energetically about his Spiderman bedroom and how he plans to celebrate his next birthday.

When describing the opportunity to donate a portion of his liver to his son, Harold said he had no regrets. "I felt it was my responsibility as a father to see that my son was ensured a good quality of life. When I look in his eyes that are no longer yellow, words cannot describe how happy I am to see him doing well."

Behind the Scenes: Living Donor Liver Transplant Program

Last November, then 3-year-old Harold became the third child in Virginia in 2011 to receive a living donor liver transplant (see page 5). Living donor liver transplants are possible because the liver is made up of segments and is one of the only organs that can regenerate and grow back to almost 100 percent of its size and function.

Prior to being approved for the organ donation, the living donor must undergo a blood test to determine blood type compatibility with the recipient. A full medical history review and physical examination follows, and the donor also meets with transplant psychologists to further discuss the decision.

During living donor liver transplantation at Children?s Hospital of Richmond at VCU, the donor and recipient each have a dedicated surgical team and are in adjacent operating rooms. Once the portion of the donor?s liver is removed, the partial organ is placed immediately into the recipient. The surgery for both the donor and recipient takes about 10 to 12 hours, followed by a 10 to 14-day hospital stay. The liver grows back in approximately two to four weeks, providing both the donor and the recipient with a full size liver.

According to the Organ Procurement and Transplantation Network, a part of the U.S. Department of Health & Human Services, 59 pediatric living donor liver transplants were conducted in the U.S. in 2011. Of the three transplants performed in Virginia, all involved a parent as a donor.

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