Piper Coffin was born the 30th of May 2003 with Alagille syndrome, a genetic disorder that can affect the liver, heart, and other parts of the body. One of the major features of Alagille syndrome is liver damage caused by abnormalities in the bile ducts. To treat Piper’s condition, she had a gastrostomy tube surgically inserted at 12 months old because she was failing to thrive and required 10 hours of constant feeding at night to help with her growth. When she was two years old an ostomy procedure was performed to help to drain bile to help improve her quality of life. Throughout the next nine years she lived with ostomy bag, and the family’s life revolved around her medical struggles.
On July 8th, 2014 Piper was admitted to the hospital due to her declining health. As mom, Cynthia, remained by her daughter’s side at Winnipeg Children’s Hospital, Piper went into acute liver and renal failure. With only 20 minutes warning, Cynthia was notified Piper would be immediately med-evacuated to the closest pediatric transplant centre which was SickKids in Toronto. Cynthia called her husband, Hank, at work and he was able to arrive and say goodbye moments before the emergency flight departed.
Separated from her family by over 2,200km, Cynthia remained alone while Piper underwent a liver transplant assessment. Hank, and twin sister Callysta anxiously awaited updates on Piper’s condition. While Piper was undergoing the liver transplant assessment by the transplant medical team at SickKids Hospital, the social worker quickly connected the family with the David Foster Foundation to help with emergency financial support.
On July 23rd, 2014 Piper was placed on the transplant waitlist for a liver. Piper’s condition continued to deteriorate as the days passed. On August 4th, 2014 Piper went into complete renal failure and fell into a coma. Piper underwent surgery to have a PICC line implanted for renal dialysis in an attempt to help stabilize. Due to the uncertainty of Piper’s medical condition her doctors recommended that the family come as quickly as possible to the hospital. The David Foster Foundation made flight arrangements for Hank and Callysta to fly to Toronto and be by Cynthia’s side as Piper battled to stay alive long enough to receive a life-saving liver transplant.
After five long days, on August 9th, 2014 the family finally received the news they were all desperately waiting for, a liver was available. Through the kindness and selfless act of an organ donor Piper was given a second chance at life and the family no longer had to say goodbye to their beautiful girl. Piper underwent a 9.5-hour surgery while her family waited in the halls of the hospital. Piper spent a total of 21 days in the critical care unit after the transplant to be closely monitored as she remained medically unstable. Her recovery was long, but with the financial help of the David Foster Foundation the additional costs of accommodations, meals, and flights taken care of, and the family was able to remain in Toronto to support one another. Piper’s kidneys slowly began to function again after the liver transplant, and she was finally able to stop dialysis in early September.
On September 24, 2014, Piper was finally discharged after being in hospital for more than three months. Piper was required to remain in Toronto to received daily IV treatments and attend medical follow-up appointments. Hank and Callysta returned home to Winnipeg, Manitoba in October to prepare for Piper’s homecoming. On November 21, 2014, nearly four months after being med-evacuated from Winnipeg and uprooted from their lives, Cynthia and Piper were able to return home and be reunited with their family.
Today, Piper is doing well. The family continues to guard Piper from germs and virus’ to prevent liver rejection, and meets with doctors for transplant follow up appointments. None of this stops Piper from enjoying swimming, biking, and being creative. She and her twin sister Callysta will be returning to high school in the fall. Hank and Cynthia have been stationed in Winnipeg since 2012 with the military. Hank has retired and Cynthia continues to work for the Royal Canadian Air Forces while both watch their two daughters grow up together.
“My oldest boy was killed in a car accident a week after graduating high school and I thought that was the worst, worst feeling in my life. Watching Piper go through this and knowing those horrible, horrible feelings of losing a child… I couldn’t do it again. I can not lose another child” – Hank