By Sue Wambolt, Contributing Writer
Lydia at Salisbury Beach
Shrewsbury – When Rich and Dawn Cavanaugh drove to St. Elizabeth’s Medical Center in Brighton Aug. 1, 2003, to welcome their fourth child, they did so full of hopes and dreams for the baby they would soon welcome into their family.
“I had expected to come home with our brand new, sweet little girl after two days, but Lydia did not come home with me,” Dawn recalled. “It broke my heart to leave her there. At one week old she was diagnosed with Biliary Atresia and was transferred to [Boston] Children’s Hospital.”
Biliary Atresia (BA) is rare disease, affecting about one out of every 18,000 infants. With it, bile flow from the liver to the gallbladder is blocked. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells (cirrhosis) and finally liver failure.
At Children’s Hospital, Dr. Heung-Bae Kim, director of the Pediatric Transplant Center, performed a Kasai procedure in which he removed Lydia’s damaged bile ducts and brought up a loop of intestine to replace them – allowing the bile to flow straight to the small intestine. Without the surgery Lydia would not likely have seen her third birthday.
Lydia returned home at five weeks old to join brothers, Christopher and Joshua, and sister, Katherine.
Lydia is currently a sixth-grader at Sherwood Middle School. She loves to play Minecraft, make bead jewelry and friendship bracelets, and work on knitting looms – much like any typical 11-year-old girl. Aside from a strict regimen of twice daily pills and supplements, Lydia has no restrictions due to BA.
(Back, l to r) Rich, Dawn, Chris, Katherine, (front, l to r) Lydia and Josh (Photos/submitted)
For Dawn, mothering a child with BA has its challenges and sleepless nights.
“It is very scary. I’m always on the watch for fever, lethargy, crankiness, jaundice and any complaining about stomach pain on the right side,” Dawn said. “I’m always asking her how she feels, feeling her forehead, looking into her eyes for any sign of yellowing.”
Over the years Lydia has had a number of liver infections and, more recently, developed complications associated with liver disease which further deteriorated her liver and her health. Due to increased liver infections, Dr. Kim recommended that she be considered for a liver transplant. On Sept. 26 Lydia’s name was added to the transplant list due to pediatric end-stage liver disease – and the waiting game began.
“Lydia is scared and says she’s not ready. She jumps every time she hears my phone ring and I do, too,” Dawn said. “She’s happy that she’s on the list because she knows that it is the only chance she has to live a close-to-normal life. I’m just thankful that her liver worked for her this long.”
For now, Lydia waits and hopes for a liver to become available.
According to U.S. government’s information on organ and tissue donation and transplantation, Lydia is one of 123,944 people in the Unites States waiting for an organ. Every hour 10 people are listed for transplant, 240 on a daily basis. Last year more than 28,000 lives were saved as a result of organ donation. Unfortunately though, 18-21 people die every day waiting.
To learn more about organ donation, visit donatelifenewengland.org or organdonor.gov.