Hannah: An Organ Donation Miracle

April is National Donate Life Month. For the Wastlunds, a Wesleyan family in Osawatomie, KS, this day is more than just a passing thought. Hannah is alive today because of the generosity–and yet loss–of another family. Hannah is the daughter of John and Angie Wastlund, and the family attends Osawatomie Wesleyan Church where John serves as pastor.

Angie tells Hannah’s miraculous story of survival below. 

Hearing the words “Mom, can I drive?” from a sixteen-year-old teenager might not mean as much to some moms, but to this mom it is music to my ears. Five years ago on May 18, 2005, we were not so sure that Hannah would live to be a teenager and experience all of the normal things teens girls experience–driving a car, baby-sitting, the joys of shopping and make-up–and all of that girl “teenage drama” we all know about. But I am happy to say that Hannah is a normal, healthy sixteen-year-old teenager today because of organ donation.

In July 1994, when we took Hannah in for her check-up at six months old, our family physician noticed that her abdomen was mildly distended and he immediately suspected there was a problem. After extensive blood tests and liver scans at an area children’s hospital, Hannah was diagnosed at seven months old with a very rare genetic liver disorder called glycogen storage disease.

The Disease

Glycogen storage disease (GSD) is a group of inherited disorders where an abnormal amount or type of glycogen is stored in the liver. It occurs as a result of the liver's failure to regulate the metabolism of glycogen and glucose. Glycogen storage disease occurs when an enzyme (proteins produced by the body which regulate conversion of sugar, or glucose, into its storage form) is missing. There are at least 10 different types of GSDs, which are put into groups based on the enzyme that is missing. When glucose is changed into glycogen, a different enzyme is required at each step. If one of these enzymes is defective and fails to complete its step, the process stops. These enzyme defects cause glycogen storage diseases. GSD is inherited and occurs because of a defective gene from both parents. There is no medication given for this disease. We were referred to a pediatric nutritionist who discussed nutrition for treating the disease and were told upon Hannah’s diagnosis that in rare cases a liver transplant would be needed.

Hannah lived a normal life with very few symptoms related to her glycogen storage disease except for the distended abdomen and sudden lack of energy at times. My husband and I had just discussed setting up a check-up appointment with the liver clinic at the area children’s hospital since she was approaching puberty.

Worst Fear Realized

Within two days of that discussion on May 18, 2005, Hannah got very sick. We were afraid we were going to lose her as she had an acute gastrointestinal bleed. After three days in the pediatric intensive care unit, the liver specialist did a liver biopsy that proved our worst fear was now reality. Hannah needed a liver transplant to survive and was in end stage liver disease. The physicians thought it would be best that my husband John and I break the news to Hannah that she would need a liver transplant. My husband John said, “Hannah, your liver is sick and we need to get you a new one so you can feel better.” Hannah was so grown up and seemed to understand it all better than we did. She said “Where will we get the liver?” My husband and I read a children’s book to Hannah that was given to us by the children’s hospital staff explaining liver transplant. After we read the book to her, she said “So someone is going to have to die so I can live?” We told her yes and she responded with, “Well, then I should start praying for that person and their family right now.”

From that moment on everything went so fast. Hannah recovered remarkably from the GI bleed and was discharged after two weeks of hospitalization. Then, on June 7, 2005, she was listed on the National Transplant List. From that moment on our lives were not the same. We did our best to keep life as normal as possible for Hannah (age 11 at the time) and our son Joel (then, age 15).

Getting the Call

While waiting on the transplant, Hannah still had to make routine visits to the children’s hospital for blood work and follow-up care. We had her bags packed and ready to go as we waited on the call that would change all of our lives. One rainy evening in October we got that call. My cell phone rang and I just knew what it was about. On the other line was the voice of Angela, our transplant coordinator. “Tell Princess Hannah we have a liver for her!” My first reaction was “No, you cannot have her, not now. I’m not ready to give her up for this.” But I knew it was time. That was when God’s grace filled our house. John, Joel, Hannah, and I stood in a circle in our living room. We held hands and prayed for peace—and God gave it generously!

On October 21, 2005, Hannah received her second chance at an earthly life, or as we refer to it, “Hannah’s Re-birthday.” So much has happened since that day. There were ups and downs during her recovery but she’s doing great. Hannah is a true miracle of God.

There is a flip side to all of the joy. The gift of life comes with a price. If it were not for the selfless generosity of a complete stranger donating their loved ones organs, Hannah would not be alive today. During our rejoicing of Hannah’s life-saving liver transplant, there came a feeling of grief and mourning for the family that lost a loved one. All that we know about Hannah’s donor is that he was a fourteen-year-old boy. We hope to meet his family in the future to thank them in person. And to this day­–nearly five years after the transplant–Hannah still prays for her donor family.

The month of April is National Donate Life Month. Discuss with your family if you wish to become an organ donor. John, Joel, Hannah, and I are all registered organ donors.