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Prepared Witness Testimony The House Committee on Energy and Commerce
Assessing Initiatives to Increase Organ Donations
Subcommittee on Oversight and Investigations
Ms. Cheryl Koller
My name is Cheryl Koller and I am the mother of a 10 year old little girl named Caitlyn. Caitlyn was 8 years old when she was the recipient of a heart transplant. Caitlyn had just celebrated her 8th birthday in January 2001, when she became ill with what we thought was a stomache virus. Caitlyn had always been a healthy and active child and there seemed to be no cause for any immediate concern. After two weeks of waiting for her to get better, our pediatrician sent us to the hospital to have some routine testing done. An x-ray revealed that Caitlyn's heart was twice the normal size and she was in heart failure. Caitlyn was transferred to the pediatric intensive care unit at the University of North Carolina Children's Hospital in Chapel Hill. For two weeks the doctor's attempted to control the situation with medications but were unsuccessful. Caitlyn's name was placed at the top of the national transplant list on February 23, 2001. This was an extremely sad time for our family. We were very afraid of the possibility of facing the future without our daughter. There was also the confusion of her ever changing health status and the desperate wait for a new heart to become available. Eight days into our wait, the doctors told us to prepare ourselves to say goodbye because they didn't believe that Caitlyn could make it through the night. But our tough little girl did make it through that night. Two days later, surgeons at UNC attached a ventricular assist device to Caitlyn's heart. This machine kept Caitlyn's heart pumping for the next ten days as we continued our wait. On the evening of March 14th, my husband and I had gone to the hospital chapel to pray. We'd spent a lot of time praying and asking God to inspire a family faced with the death of their child, to give the gift of life to our child. It's a very difficult prayer to offer up, but we prayed with a great deal of hope and faith that God would show us His way. When we returned to Caitlyn's room a few minutes later, we were told that a heart had been found for Caitlyn . We spent a lot of time that evening praying for a very brave family that we didn't know, but owed our future happiness to. The eight hour transplant surgery began in the early hours of March 15th. One week after the transplant, Caitlyn was taken off the ventilator. A dedicated team of doctors, nurses and therapists were there with us to greet a little girl who was ready to live and play again. Three days later, Caitlyn stood up and took her first steps in nearly 1 1/2 months. It's been 2 years and 3 months since Caitlyn's transplant. She went back to school full-time this past school year and has just finished the third grade. She loves to ride her bike to the playground, go swimming, and play with the girls on our street. She's conquered a lot of obstacles, including a post-transplant stroke, to return to a fairly normal life. The doctors cannot tell us exactly what caused Caitlyn's heart to fail, but they say she's a true miracle child. This past February, we had the honor of meeting Phyllis and Nathan Slifer, the parents of Joseph Michael Ebert, Caitlyn's donor. Joseph was a sweet, big-hearted little boy who loved life. He was seven years old when a dirt bike accident tragicly ended his life. When doctors approached Phyllis about organ donation, she said yes right away. She wasn't thinking about who would benefit. She was thinking about the son she had just lost. But something inside told her this was the thing to do. She did not want any other family to suffer the same loss that she was experiencing. Phyllis and Nathan have found comfort knowing Caitlyn and knowing that their son lives on through her. Joseph also lives on in a 9-year-old girl who received his liver, a 23-year-old man who received one kidney, and a 7-year-old girl who received his other kidney. The power of one organ donor is truly amazing. One donor can potentially save 58 other lives; eight lives through the donation of a major organ, and 50 lives through tissue donation. There are nearly 81,000 patients waiting for an organ transplant today in the United States. A new name is added to the list every thirteen minutes. Caitlyn was very fortunate to have waited only 20 days for her new heart. A short wait is an exception rather than the rule. Seventeen people die each day waiting for a transplant. Today you will be hearing from many experts in the transplant field on ways to help increase the number of organ donations. Educating the American public on organ donation will hopefully increase the number of organ donations and reduce the time that a patient must wait for a second chance at life. Thank you for listening to our family's story. We are truly blessed and we're glad to be able to share our story with others in the hopes that it will encourage more people to give life and become an organ donor.
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