Fémina No 38
22 Septembre 2002
P. 28 meeting

In the Name of the Son

When Denis died at age 18, Pascale Baer-Lilla donated his organs. Owing to the lack of a list of all potential Swiss organ donors, she decided to create a computerized donor registry. Meeting.

Last January 6th, time seemed to have come to a standstill for Pascale Baer-Lilla. In the early morning hours, her son Denis was found unconscious following a car accident, some 600 meters away from his home. Then the ordeal began for Pascale and her second son Guy, 16. A more than 3 hour wait, with no news, in the emergency room. And then, long hours hoping the cervical edema would recede, while comforting Denis by holding his hands, whispering and humming to him. "We love physical contact in our family." But medical personnel failed to understand. She had to insist, threaten to call the press, almost move heaven and earth in order to remain at Denis’ side everywhere. "I did not want him to die alone." When a doctor declared cerebral death, following two head scans and other usual tests, Pascale did not hesitate for one instant. Denis would, as such were his wishes on his donor card, prolong another life. But that donor card, he did not have it on him, nor did any other record of him as a potential donor exist. Only his mother could ensure that his "living will" would be honoured. In front of the operating room door, Pascale and Guy calmly let him go. "We told him: 'Go ahead, pass the baton'."

Switzerland Drags Its Feet If we believe statistics, 80% of the Swiss say they agree with the principle of transplants, but only 11% of them carry a donor card. "That's where we see the importance of creating a data bank," as suggested by Pascale Baer-Lilla. In our country, organ donation is still a delicate subject, even a taboo. There are about 14 donors per million, three times less, for example, than in Spain. "Some countries have adopted efficient measures, such as organ donation consent on driver licences", points out the founder of “Pass the Baton”. "In France, it is presumed everyone is a donor, unless written notice stating otherwise is given to municipal authorities." Since the probability of needing an organ someday is ten times greater than that of becoming a donor, the choice is simple. In 2001, some 1,030 patients were on waiting lists, yet only 424 organs from 95 donors were transplanted. That same year, 32 people died due to a lack of donors.

Pass the baton. Hand over the torch. Pascale often compares death to a closet, where one leaves one’s envelope or clothing, and sometimes hand over the ownership to someone else. Sometimes, it is a cornea, heart, lungs, kidneys or liver… Denis did indeed pass the baton. Seven of his organs were transplanted. "I just wanted them to uphold the dignity of my son," his mother said. When they returned Denis’ lifeless body to her, she understood the depth of pain and separation. "The pain of Denis' death was not about his organ donation, it was his absence. That is what pains me." Closing the door and withdrawing into grief is not the style of this faithful woman, she is a real fighter. "In 10 years, when I am 50, would I be looking at myself in the mirror saying 'why haven't you done anything'?" Once she realized that her son could have died without anyone being aware of his decision regarding organ donation, this woman from Montreux decided to act. "Right now donor cards are available at drug stores. If you are not carrying such a card, medical personnel have no idea what your choice is on that matter." And so the idea came to her to create a registry of potential donors. But in order to do so, this Marketing Director from a private university on the Riviera had to take a three-month sabbatical. Listing interested donors is the easy part, but it is an expensive undertaking. Pascale Baer-Lilla and Guy began to raise the funds required by creating the Pass the Baton Foundation. Bounded under Swisstransplant, they are actually working to raise 100,000 CHF, collect 10,000 signatures and find sponsorships. "We would like to launch a promotional campaign with sports and political figures featured on standard-size posters."

Up to now, Pascale has seen many politicians, including one Federal Councillor, and she is multiplying contacts everywhere she goes. Once the project is well underway, she will return to marketing. "We just want to get some results." She is moving towards her objectives with the assistance of volunteers. Guy, his friends and Denis' friends, "her little coaches" as she calls them, are doing their part to keep things moving. "They are always asking me where I am at on the project."

"Organ donation is still taboo, both poorly promoted and under-funded. Yet it is nothing shameful -- it's not leprosy or the plague."

Living for the Moment
In the weeks that followed Denis' death, Pascale asked for news about the recipients of his organs, but medical personnel tried to convince her that this would not be very healthy for her. "I was simply concerned about their condition. Whether they had received a new heart or lungs, those organs were theirs now" no longer Denis’. Denis was like "quicksilver", a 2-meter tall guy overflowing with life. Imagine, if his head had hit a few centimetres lower, only his jaw would have been broken, nothing more. "There are always so many "ifs"… But such is fate, and there is nothing one can do about it", she says.

From her parents Pascale inherited one great truth: "Live for the moment" "Life can be futile and so short." She pulls out a photo from last Christmas. We can see happy and relaxed faces. "A time full of love." She recalls past vacations spent discovering the world but, for the time being, all her energy is focused on the Foundation so that other deaths may prolong more lives. In the future, she is considering changing jobs and moving. "She wants to start from scratch again". Little by little, Denis' room is becoming an office. But his skateboard still remains in one corner.

Sylviane Pittet

Pass the Baton
Phone 021/ 964 19 15
Portable 079/ 212 02 29
Donations : CCP 69-6966-7
www. passezlerelais.org
e-mail : info@passezlerelais.org

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