By Cathy Conley
Posted May 04, 2010 @ 04:11 PM
“Where’s Jeff?” Caitlin Downey is asked.
The two-year-old runs for a framed photograph of a handsome young man. She picks it up and hugs it. The toddler and the man in the photo have a special bond.
Two years ago, the vibrantly healthy young man died in a fall. Not too far away, a five-month-old baby was near death in a bed at Children’s Hospital. Within a few hours, the parents of the young man, Jeff Powers, donated his organs. Part of his liver was rushed to Children’s Hospital, where it was given to Caitlin and saved her life. She has thrived ever since.
Caitlin’s parents, Shawnna and Tim Downey of Weymouth, now devote their lives to promoting organ donations and fundraising for the Transfer Center in the Pediatric Unit at Children’s Hospital. Shawnna contributed to a website telling Caitlin’s story and asking for donations to her NSTAR Walk for Children’s Hospital. A couple whose name she did not recognize donated. She emailed the couple and learned that they were Jeff’s parents.
The two families are now inseparably bonded by a donation from a life lost to a baby who now has a life to live. Caitlin was born Dec. 7, 2008, the youngest of the three children of Shawnna and Tim. Doctors recognized immediately that Caitlin was in distress. “She had a little temperature. Her platelets were low. Something was not right with her liver,” Shawnna said. On day three of her life, Caitlin was rushed from South Shore Hospital to Children’s Hospital. Her fight for life began. A benign tumor was found in her liver. It was stealing blood from her liver and sending too much blood to her heart and lungs. “Doctors said this was good news. They could treat it with steroids,” Shawnna said. Shawnna and Tim brought their beautiful baby girl home to wait for the steroids to do their work. Shortly after arriving home, Caitlin had a cyanotic episode and stopped breathing. She was rushed back to Children’s Hospital. The tumor was not shrinking. She was jaundiced due to the liver malfunction. “She was yellow as a dandelion,” Shawnna said.
Doctors tried surgery. In a 12-hour operation, tiny tubes and plugs were inserted into her vessels to try to correct the blood flow to the liver. After the operation, the central line to the heart became infected. “She almost died then. Her whole body shut down,” Shawnna said. The doctors pumped drugs that were toxic into the baby. “’We must get rid of the infection. Then we’ll take care of the liver,’ the doctors said,” Shawnna said. By this time, Caitlin’s liver was so diseased that fluid from her blood vessels began to flow into the abdominal cavity. Her tiny body, weakened by surgery and infections, couldn’t fight any more At three months old, she “coded,” Shawnna said. “Her heart stopped for five solid minutes. The whole hospital rushed to her bedside.” Caitlin was revived through chest compressions. She was put on a high frequency ventilator. As fluid was drained from her stomach, albumen was pumped into her body to maintain a fragile balance to keep her alive. “If she had another infection, she would have died,” Shawnna said. Caitlin had already spent four months in the neonatal intensive care unit at Children’s Hospital. Her chances for survival were grim.
She was put on the top of the donor list. Shawnna was given a beeper as she sat by her baby’s bed. Now it was time to wait. On the second day after Caitlin was put on the donor list, Shawnna was shopping in Walgreen’s and Tim was at the Little League field with his 10-year-old son Devin. “The doctor called. ‘We have a liver,’ he said. I went running out of Walgreen’s screaming ‘My daughter has a liver.’’” As Shawna rushed back to the hospital, she called her husband on the cell phone to tell him. “He was running around the baseball field screaming, just like I was,” Shawnna said. “All we knew was that Caitlin would get a split liver from a young adult male who had fallen. A 40-year-old man would get the other half. The donor society doesn’t give any more information.
“The liver is the only organ in the body that regenerates itself,” Shawnna said. Time was of the essence. There is a small window for the procedure. The donor has to be within a certain radius so the doctor can get the organ quickly and bring it back to the hospital. While the doctor goes to harvest the organ, the operating room and the patient are is set up for the operation by a team of surgeons and the operation begins before the organ arrives.
On May 6, 2008, on the day before she was five months old, Caitlin got a new liver. Recovery was not easy. Today she is a healthy two-year-old with a tussle of soft strawberry blond curls and a radiant smile. Shawnna and Tim have devoted their lives to raising awareness of the gift of organ donations and raising funds for the Transplant Center in the Pediatric Unit of Children’s Hospital. They began taking part in the Walk for Children’s Hospital Boston three years ago. Each walker is given an internet page to raise funds.. Shawnna mentioned Caitlin and her transplant on her page. She noticed a donation from a couple whose names she didn’t recognize. She emailed them and learned that they were the parents who donated their son’s liver. She sent them a letter and photos of Caitlin.
The Organ Donor Society is strict about confidentiality. Both families signed a release and now can communicate with each other freely. This is only the second time in the history of Children’s Hospital that families have communicated with each other. The Powerses have visited the Downey home. They have held the little girl who has their son’s liver. They have given Shawnna and Tim a memorial video of Jeff. “We think about him all the time,” Shawnna said. They gave Caitlin Jeff’s favorite childhood book, “Lyle Lyle Crocodile.” Jeff’s middle name was Lyle. The book still has his name written on the inside cover. “We will treasure that book forever,” Shawnna said. “Seeing Caitlin so alive and healthy has brought Jeff’s parents such joy..
“They said her smile kindles such fond memories. “Caitlin has able to have life because of them. There is a special bond between us. We will be forever connected.”
On Sunday, June 13, Shawnna and Tim will lead a team of family and friends in NSTAR's Walk for Children's Hospital Boston. They will be walking the Charles River for the third year in a row. “This walk has become a tradition for my family, and this year, we will once again join the Pediatric Transplant Center Team,” Shawnna said. “I know first hand that the lifelong follow up care of a transplant recipient is very costly.
“All money raised by me for this walk will go directly to the PTC to help transplant patients and their families who are in need. I will be forever grateful to our transplant team for they are like family and will be in our lives forever.
“I will be walking in honor of my beautiful daughter Caitlin, who received a split liver transplant when she was a mere five months old. Because of a wonderful, selfless donor family and an incredible team at Children’s Hospital Boston who care for her, Caitlin is now a happy, healthy, and energetic two year old. Caitlin loves life to the fullest.
“I feel incredibly lucky that Children’s Hospital Boston, one of the country’s top pediatric hospitals and a world-renowned treasure, is a part of our community. Without the life saving hands of our doctors and one very special donor, this cause is very near and dear to me. Participating in this walk is my way to pay it forward as much as I can. I want every child to have the chance that our little Caitlin has had, and that’s a life full of health and happiness.”