Jackie Seki

As a bright, bubbly 4 year-old, Jackie Seki shows few signs of the physical struggles that characterized much of her young life. Jackie underwent her first surgery when she was just 14 hours old. Her doctors in Hawaii, where the Seki family live, hoped to diagnose and clear what they suspected was an intestinal blockage. Instead, exploratory surgery confirmed a worst-case scenario: Jackie had long-segment Hirschsprung’s Disease, a bowel disorder in which some of the nerve cells that are normally present in the intestine do not develop properly during pregnancy. “The doctor said she had two days to live,” recalls Jackie’s mom, Liann. “I was devastated.”
 
Neonatologists, gastroenterologists and other doctors at the hospital in Hawaii met with Liann and Jackie’s father, Rick, to explain her condition and discuss possible treatments. Another surgery would be required to place permanent feeding and medication lines and redirect her intestine to help it function. But Liann and Rick struggled with the choice. Liann remembers wondering, “Was her life going to be filled with pain? And if so, why go there?
 
With the doctors’ reassurance, Liann and Rick decided to go forward with treatment. At 7 days old, Jackie underwent a second surgery to allow her to receive all her nutrition intravenously. Although this type of feeding, called “total parenteral nutrition,” was the only option for nourishing Jackie, it can, over time, take a devastating toll on a child’s liver. After another surgery at 2 ½ months old, Jackie was still requiring a significant number of blood transfusions because of her deteriorating liver. It was clear to Jackie’s doctors that she would probably need not only an intestinal transplant, but eventually a liver transplant as well.

Jackie and Rick Seki, shortly after Jackie's intestinal and liver transplant.

Jackie’s doctors in Hawaii were already well acquainted with doctors from Lucile Packard Children’s Hospital, where extensive outreach programs include regular clinic visits to many hospitals in several states. Packard Children’s gastrointestinal specialists conduct a clinic in Hawaii every six months. When Jackie’s doctors decided that Jackie was ready to be considered for a transplant, referring her to Packard Children’s was not just the best medical choice, but also the best logistical one. “When we were deciding among the best hospitals for Jackie’s care, Packard’s outreach program was a huge factor in our selection,” says Liann. 
 
Jackie began her long course of care at Packard Children’s at just 3 ½ months of age. Packard doctors hoped that she would have time to grow a little before undergoing transplant surgery, but her worsening condition made the wait impossible. Over the course of several months, additional diagnostic surgeries, procedures, weekly transfusions and unexpected complications made it clear that a rare, high-risk, combined small-intestine and liver transplant was Jackie’s only hope.
 
Liann had been deeply involved in Jackie’s care right from the start, and found her participation strongly encouraged during Jackie’s stay at Packard. Packard Children’s Family-Centered Care program includes parents as partners with doctors and other health care providers in determining an optimal plan for their child’s care. Liann says, “Packard’s Family-Centered Care Program is the feature that sets Packard above other hospitals. I was allowed to be a part of the decision-making process, allowed to make my voice heard. The doctors would actually thank me for my contributions to the discussion.”
 
After many months and with Jackie’s first birthday fast approaching, Liann prepared a traditional Hawaiian luau celebration that would also be an opportunity to reflect her gratitude to the Packard staff members who had been sustaining her little girl. “Packard had become like family to us. We brought in food from Hawaii and invited everyone from the hospital to come.”
 
But fate had something better in mind. “They always tell you that the transplant call will come when you least expect it,” added Liann. And so it did, on Jackie’s Seki’s first birthday. What greater gift could she hope for? One of the first combined intestinal and liver transplants, Jackie’s 12-hour surgery was a success. Although the luau would have to wait—there was more to celebrate on that day than they had ever expected.
 
Several months later, Jackie, Liann and Rick took a commercial flight back to Hawaii without the assistance of a medical transport team as they had needed in the past, and went home for good. Months of cautious recovery at home would follow, but since Liann had been closely involved in Jackie’s care from the beginning, she was well prepared.
 
Succeeding through each step of recovery, Jackie eventually learned to roll and crawl. “She had never been on her tummy!” recalls Liann. And that was just the beginning. She soon learned to walk and run, too. And her vocabulary of sign-language that numbered in the hundreds soon grew into a verbal eloquence beyond her years. “We call her ‘Miss Mayor,’” says Liann, “because she loves to greet everyone and chat.”
 
This year, just days before her own 4th birthday, Jackie welcomed her new little brother Spencer. With Spencer and Jackie both in the best possible health, it looks like they are ready for that luau after all.