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Le Matin - 01/11/2002
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EDITORIAL
An organ donation is a gift of yourself Evelyne Emeri I am going to die. Maybe tomorrow. Definitely at some point. I have never spoken to anyone about what I would like to give to science. I’m the perfect example of someone who thinks about AIDS, cancer, terminal illness or an accident—in short, who thinks about death. I am the opposite of the Pass the Baton Foundation—I am the anti-donor. As I finish writing this "family reunion" story about Jem Momtaz, I discover that I have a heart that others could use if the Grim Reaper were to snatch me away, that I have a liver, kidneys and lungs that I have received on loan, like my life. I have discovered the importance of giving of yourself, of giving a legacy. I have learned of my folly. The story of Jem and Denis and their mothers calls me to order. This very day, I’m going to talk about it to anyone who will listen. I want to say that I support it, that organ donation is essential. I want to say that organs that are buried or incinerated are wasted. I want to say that if we don’t use an organ, it dies a second time. I want to say thank you to Denis, a traffic fatality who restored happiness to seven families. What more compelling example can there be? Pass the Baton is more than a foundation. It’s a choice of death that bridges the irreversible. Organ donation must and can no longer be the domain of the medical microcosm and anonymous recipients. It is everyone’s concern—yours, mine. I call on everyone to act. I feel calm, happy: I am immortal and I didn’t even know it! Because of you, my readers, the witnesses of my new determination, tomorrow won’t die after all. ORGAN DONATION Two mothers whom one heart brought together
Pascale Baer-Lilla of Montreux lost her son on January 6. Christine Meylan of Pully witnessed her own son’s rebirth a few hours later, thanks to Denis’s heart. By chance, they were able to contravene the stipulation of anonymity. In the name of life. Evelyne Emeri Vaud November 1. 2002 "It was in June. I was at my hairdresser’s in Clarens when I came upon an article in L’Illustré about a young myopathy patient who owed his life to a heart transplant at the CHUV. When I read the date of the transplant, I knew it was Denis’s heart. It was wonderful, especially when I came to the end of the article, in which the recipient’s mother expressed her special thanks to the donor’s family." Pascale Baer-Lilla returned home to Chailly-sur-Montreux feeling both joyful and stunned. Five months after losing her oldest son, an 18-year-old, in a pointless traffic accident a few hundred metres from home, she knows. She knows that her son Denis has passed on happiness, has passed the baton. And she knows whom to. She told Guy, Denis’s younger brother, about it right away. Together they wondered, should they, could they, break the Faculty-imposed taboo? Did they have the right to violate the stipulation of anonymity between donor and recipient? Should they contact the family of Jem Momtaz, the recipient, or leave them in peace? Their minds whirled with questions. "We didn’t want to infringe on their privacy," explains Baer-Lilla, a picture of patience who is busily creating a professional foundation to set up an exhaustive census of potential donors in Switzerland. An Open Secret The pieces of the puzzle were falling into place for Jem’s family, too. In the spring, the 21-year-old Jem ran into an acquaintance in Ouchy who lived in Montreux. She asked him directly, "Do you think you might have Denis’s heart?" Denis? Jem didn’t know about it yet. He and his parents would make the connection while watching "Comment ça va?" on TSR. The program was a discussion of death-related issues, "La mort dans tous ses états." Pascale Baer-Lilla was a guest on the show, and told her story. Now Jem and his family knew. They knew who had given them the gift of a longer life for Jem, whose heart could have given out at any time since he was five months old. The weeks passed in both households as their occupants adjusted to this open secret. Out of respect. On September 24, Christine Meylan, Jem’s mother, couldn’t take it any more. Femina had just published an article about the woman from Montreux and the foundation she was trying to set up. The need to talk with her was too strong. "I grabbed my phone," remembers Jem’s mother. At the other end, Denis’s mother exclaimed joyfully, "I’ve been waiting for months!" Out of Death Comes Life The two mothers met a few days later. Tea lasted into dinner. "We recognised one another, and bonded out of maternal strength. Over the line that is still unbroken. We needed to communicate. We needed the clarity of recognizing that a part of Denis is inside Jem, but at the same time all of Denis has left," Pascale and Christine chime in together; it’s very clear in their minds. Magical contact, tears of joy. Despite everything, it is still a gift of life. Neither of them can express the beneficent effects of having this truth verified. They are both living proof that meetings between the families of donors and recipients do not in fact lead to chaos. They both know that their convictions are unsettling and are fuelling debate. And that’s all to the good, because they cherish the unconditional dream of making all of Switzerland realise that organ donation is essential, that out of death comes life. Jem knows a thing or two about life. He had suffered from myopathy since he was four, and had nearly succumbed several times. Like others in his situation who were waiting for a life-saving organ, he had hoped that someone would die so he could survive. Now he can look this terrible reality in the face, with a maturity stemming from the success of the longed-for operation. Above all, he finds reassurance in the knowledge that he "didn’t get a criminal’s heart".
Pass the Baton! "To this day in Switzerland, potential donors are not registered anywhere. In other words, if you are not carrying your Swisstransplant card with you, your ‘living will’ can be changed by someone else," Pascale Baer-Lilla explains. She’s not being critical, just stating a fact. Baer-Lilla has decided to remedy this deficiency by creating a professional body that maintains a database of all potential donors. The 40-year-old Baer-Lilla has set herself the goal of raising one million francs by June 2003/04, and hiring 10 or so employees. Her foundation, Pass the Baton, has been up and running since October 14. She is its official director, and physician and National Councillor Charles Favre is its chair. Pass the Baton: Tél. 021 964 19 15. Legislation in the Making Switzerland does not yet have federal legislation governing organ retrieval and transplantation. At present, the cantons listed below have jurisdiction to enact legislation in this field. There are three consent models: - Express Consent (JU, OW, SO, TI, UR): the express agreement of the donor or his or her close relatives is required. - Presumed Consent (AR, AI, FR, GR, LU, NW, SG, TG, VD, VS, ZH): organs may be retrieved unless the decedent or, failing that, his or her close relatives object thereto. - Presumed Consent B, the so-called "information model" (AG, BE, BS, BL, GE, NE): if the decedent did not express his or her wishes during his or her lifetime, his or her close relatives have veto right. However, although most cantons have opted for presumed consent, express consent prevails in practice. A uniform bill, advocating the consent model in general, is before the National Council’s Committee for Social Security and Health. The Parliamentary debates could begin in early 2003. 2001 Statistics -Organ transplants: 424 -Donors: 95 -Patients on waiting list: 1,030 -Deaths of patients on waiting list: 32. © Le Matin The reproduction of text, photographs or documents from this site without written permission from the editor is expressly prohibited. |
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