Jamie's Story

By Kathy Cormier

I gave birth to Jamie Lee Russell Cormier on September 26, 1988. He weighed in at six pounds, 15 ounces. We also have a daughter, Kara Rae, who was about to turn two when Jamie was born. My husband was in the Canadian Armed Forces and we had been transferred to Trenton, Ont., from Victoria. We had only been in Trenton a few months before Jamie was born. Everything was fine until Jamie was about five weeks old. The symptoms that aroused our suspicions were unusual stools and continued jaundice. Jamie was admitted to Belleville General on November 5, 1988.

Over the next few days, a number of tests and x-rays were done. Watching my child poked and probed was very difficult to handle. Little did I know this was the beginning of a long journey into a world I knew little about.

Little Jamie was transferred to Sick Children's Hospital in Toronto. With every new test came a new fear that this one would prove that something "bad" was really wrong with my tiny, precious son. Then came the news: Jamie had Biliary Atresia. It's difficult to put into words how you feel when you are told your infant son has a serious disease. I felt instant guilt even though I was told there was nothing I did or didn't do to cause this problem. The best way I could deal with it was to try and understand exactly what this disease was and what our options were.

Biliary Atresia is a serious disease of the liver. The ducts that carry bile from the liver to the intestine (gut) are damaged. The bile can't leave the liver and accumulates, causing damage to the liver tissue. Bile flow must be established. If not, the child rarely lives beyond two years of age.

Jamie required an operation called the Kasai Procedure to try and create a new pathway for bile flow using a piece of intestine. In Jamie's case, they also brought a loop of bowel to the surface of the skin. That required attaching a small bag to collect any drainage for testing. This enabled doctors to see if the operation had established bowel flow. Jamie came through the nearly six-hour procedure quite well on November 23, 1988. The next few weeks were tiring and stressful, waiting to see if the Kasai had worked. We were finally able to take Jamie home on December 17. In order to do so, we had to learn to take care of the outside bowel. It's amazing what you can do when someone you love needs you in a way you never imagined. The medications required on a daily basis were overwhelming. But it was just a fantastic feeling to have our family together at home again.

But Jamie grew weaker over the next few weeks. It was so difficult watching him get worse and not be able to stop it. On January 14, Jamie's bowel began bleeding and he was transported back to the hospital. Once again our family was being separated. We were lucky to know two families that could help us out in caring for our daughter. This was also very difficult on Kara because she had to be apart from us for stretches and was still too young to understand it all.

The doctors decided the Kasai procedure had failed. On February 17, 1989, Jamie had further surgery and assessment for liver transplant was begun. On March 10, we were again able to take Jamie home. Along with us came a pager. This would enable Dr. Superina, liver transplant specialist, and Nancy Graham, the R.N. in charge of the transplant team, to reach us at all times in case a liver became available. Even though Jamie's condition was deteriorating, he always managed one of his beautiful smiles.

Those smiles got me through some very rough days. Into May, 1989, Jamie grew much weaker and thinner. I had many days when I wondered just how long he could hold on while we waited for a donor. The smaller Jamie got, the more difficult it was to find a liver. Time was running out and yet Jamie kept right on fighting every minute to live. I thank God he's a fighter because I strongly believe he wouldn't be here otherwise.

On July 8, 1989, a liver finally became available in Newfoundland. But it was too large. We were devastated and ever so scared that there wouldn't be another one in time. But on July 16, another donor was found. It was such an emotional time because in order for our son to live, another child had to die. We felt a lot of pain for those parents even though we didn't know them. I held Jamie in my arms and rocked him for hours until it was time for the transplant. When I had to hand Jamie over to the O.R. nurse, I really didn't know if I would see him alive again.

The transplant took 16 hours and required further surgery in ensuing days. Jamie went Code Blue and ended up back in intensive care. A blood clot was discovered on the side of the liver and was removed. But Jamie's condition remained bad. I just wanted to hold him and make everything all right like moms are supposed to be able to do for their children.

To this day, they still don't know what finally turned things around but Jamie finally started on the road to recovery. On September 26, 1989, we celebrated Jamie's first birthday. This was a day I had wondered if Jamie would ever see. We were still in the hospital but it was a special day for all of us.

Jamie finally came home in November of 1989. It was like giving birth to him all over again. He is truly a miracle to us. Jamie will turn 11 on September 26 of this year. On July 16, we will celebrate his 10th anniversary of receiving his liver. We moved from Trenton to Victoria seven years ago. I have been raising Kara and Jamie as a single parent for the past six years. Jamie's health continues to have many ups and downs but the three of us are a team and will continue the journey together, no matter what happens. Since returning to Victoria, we have been very lucky to become associated with the David Foster Foundation. They are there financially for our many medical trips to Toronto but it goes beyond just that. They are also there for us emotionally. There are so many "Angels" connected with the Foundation to whom I will be eternally grateful.

I consider both my children very special miracles. We continue to make many trips to Toronto as Jamie's battle continues to be a difficult one. We are returning to Toronto again in July for further procedures. No matter how long you have been doing this, it never gets any easier. I take it one day at a time and thank God for every precious moment the three of us are together, no matter the circumstances. There is one last, but very important, thought: "Don't take your organs to heaven. Heaven knows, we need them right here!"

Kathy Cormier, June 1999