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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. Susan Kantrowitz
Good afternoon! My name is Susan Kantrowitz, and I am representing myself as a donor family member. My husband, William Colbert, Sr., was a deceased donor. I am here to tell you my story. Thank you for this opportunity. It is indeed my pleasure. It was an ordinary Friday night in August 1999. My mother came for dinner. My four-year-old son was bouncing off the walls as only four-year-olds can do, and my one-year-old was doing a little furniture surfing, testing his newly-acquired walking skills. My husband changed after dinner and went back to work. Bill was the Deputy Chief Counsel at the Bureau of Engraving and Printing and needed to take a deposition from a member of the night shift. I got up with the baby around midnight and heard my husband return. He headed down to the basement to begin putting his notes together on the computer. After the baby was asleep, I decided to go down and see how Bill was doing. I found Bill on the floor. He had laid down and put a toy under his head. It was obvious that something was wrong, and when I couldn't wake him, I called 911. I called a neighbor to come stay with the boys and started for the hospital. One of the paramedics took me aside as they were putting Bill into the ambulance. He told me it didn't look good - he pointed to his own head and implied that there was something wrong inside Bill's head. We live less than a block from Mount Vernon Hospital and I chose to walk over. On my way, I met my neighbor. He gave me his cell phone and immediately joined me at the hospital so I wouldn't be alone. After a long wait, a nurse came in and told me they put Bill on a respirator. She explained that this was routine practice as a precaution. They also called in a neurosurgeon. After examining my husband, the neurosurgeon called me into Bill's room. Bill had no responses. A CAT scan revealed a massive amount of blood in the brain. A blood vessel broke - there was no telling why. Bill had suffered a massive stroke and was gone. Technically he was brain dead, although his body had not died yet. It was at that time that we started to discuss organ donation. As soon as it was mentioned, I had a flashback to an episode of the "ER" television program some years earlier. Bill and I never watched "ER," but for some reason, it was on that evening. In that episode, a teenage girl needed a lung transplant to survive. In the next room, there was a badly burned fireman who was going to die. As only Hollywood would have it, he was a perfect match for the teenage girl. In the episode, the doctors have a great debate about hastening the death of the firefighter so the transplant could be done and the teenage girl saved. I remember it well because the next morning on our way to work. We discussed the episode. We noted how irresponsible the episode was to infer that those kinds of debates actually happen and that an individual might not be saved because he/she was an organ donor. We both felt that it was unconscionable to plant that kind of seed in the public's mind. Both of us agreed that we wouldn't hesitate to donate our organs if the opportunity presented itself. It was the right thing to do. Even remembering this conversation, I didn't agree immediately. My husband was lying in a hospital room - for all intents and purposes alive. Yes, he was breathing with the help of the respirator, but as the nurse told me, that was routine. His kidneys were functioning, his skin was warm to the touch, and on this hot August night, he was sweating. I sat with my brother-in-law, also a doctor. He looked at the CAT scan. He confirmed that Bill wouldn't survive. Regardless, I still had an overwhelming feeling of abandoning him. I felt that I was turning my back on him and sending him to his death. My heart and my head were telling me two different things. The coordinator from the Washington Regional Transplant Consortium, Mr. David DeStefano, was fabulous. He sat with me and answered all of my questions. He explained that one donor can save 50 lives, not only through organs, but through tissues and bone as well. He met with me endlessly answering question after question: What would happen to the body? How would he look? I agreed to donate Bill's organs and tissues, with one condition. Bill's best friend Mark needed a kidney. I wanted Bill's kidney to go to Mark, if they were a match. We agreed that Bill would become a deceased donor. Unfortunately, Bill and Mark were not a match. I asked if we could "barter" his kidney for another that would match Mark. The law at that time, did not allow that kind of arrangement. I went forward with the donation. It was the right thing to do. Bill underwent a thorough examination to be sure that there was no disease or damage to the organs. Part of that was a test to ensure that Bill was in deed brain dead. Three different doctors had to certify that he would not recover from the stroke. I had another conversation with Mr. DeStefano. If there was any chance whatsoever that Bill was going to survive, I didn't want the organ donation tests to kill him. One of the tests was oxygen deprivation for five minutes. Again, I was assured that Bill was not returning. I had to trust the doctors that they were telling me the truth. I was still dealing with this tragedy. I was now a widow and my boys were fatherless. I signed the papers allowing the doctors to take everything and anything usable. Before going into the operating room, I met with the leader of the surgical team. He cried with me as I asked that Bill be treated with the utmost dignity - as if he would survive the surgery. He assured me that they would, and I kissed him good bye as he went into surgery. They were able to take and use all of his organs, his corneas, the skin off his back (to be bandages for burn victims) and the bones from his arms and legs. A few days after the funeral, a friend called to apologize that his wife couldn't attend the funeral with him because she was with their granddaughter who was having surgery. She was born with deformities in her leg bones and they were going to remove the affected bone and replace it with bone from a cadaver. I was able to tell my friend that I knew all about the procedure, because Bill's bone had gone to just such a bank. In donating Bill's organs and tissues, I was able do something positive with a tragedy. I have never been sorry. The Washington Regional Transplant Consortium has been wonderful. I have been able to take advantage of numerous support groups that they sponsor, and faithfully attend the Annual Family Gathering where deceased donors are remembered and thanked. This has become crucial for my boys, who are now seven and four years old. With them, I hope to soon meet the recipients of Bill's organs and tissues. I have received tremendous support from them and am now enjoying returning the favor. I am always happy to talk on behalf of organ and tissue donation. Before I finally decided to donate Bill's organs and tissues, I asked Mr. DeStefano about dealing with my boys. I wondered what I should tell them. He told me to tell them that their father was a hero. He said that Bill was no different from a fireman or policeman. He saved lives. He was a hero. Thank you for your attention. I am happy to answer your questions.
Susan Kantrowitz Donor Family Member Summary of Testimony U.S. House of Representatives Committee on Energy and Commerce June 3, 2003 Husband Bill was a deceased donor in August 1999. I. Bill suffered a massive stroke unexpectedly. II. No symptoms or warning signs. Decision to become an organ and tissue donor was influenced by many things, including: III. An old episode of the "ER" television program. IV. A friend that needed a kidney. V. Being able to put a positive spin on a tragedy. He was a hero Washington Regional Transplant Consortium was extremely helpful and very supportive. VI. Answered many questions and was with me throughout the decision process. VII. Treated me and my husband with the utmost respect and dignity. VIII. Offered participation in many support groups. IX. Annual Family Gathering for donor families recognizes and thanks donor families for their support.
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