**3. Donor families who want to know more about their loved one's recipients**

Of the donor families whom we have met across the world virtually every one of them says what we say: that donating was the one uplifting thing to come out of a time when everything else was empty of meaning. Even so, for many of them there is a feeling of incompleteness because in many countries they are allowed to learn only a few sparse details about the recipients: how old they are, whether the transplants were successful, what organs were used. That's all. It's quite impersonal, nothing much to go on to build a picture of what the recipients are like.

They have to imagine it—and what they imagine can be wildly wrong. In a few months they do not know how the recipients are doing, even whether they are still alive. It's shabby treatment (isn't it?) for people who resisted an almost overwhelming instinct to turn inward in sorrow and bitterness and instead put their grief on hold long enough to help people in desperate need whom they had never met and could not even visualize.

Originally the restrictions were imposed for the best of reasons. When transplantation was in its infancy and half the cases were unsuccessful, those who set the rules thought it would be heart-breaking for donor families to find their decision, which had often caused them such an emotional wrench, had after all been in vain. They also wanted to protect the families from unwelcome publicity.

As the treatments matured, and successful transplants became the norm, the objections to any form of contact between the two sets of families became more strained and to smack more of authority wanting to impose control than for the benefit of the families. Suppose the donor family does not like the recipients, opponents asked, will they wish they had not agreed to donate? What if a strongly religious family of donors finds out the recipients are of a different faith? What if the donor family had lost a child and had set its heart on saving other children but instead finds all the organs went to grown ups? Suppose a donor family asked the recipients for money?

These fears, though they are still cited, were always hugely overblown. Families who are willing to donate have already been through a crushing experience and few of them doubt that saving the lives of several other people is far more important than whether those people have a lifestyle similar to their own. By the act of signing the consent form they know they have agreed the organs will go to those who are most in need and that is what they want.

Indeed, it is one of the inspiring aspects of organ donation that it is a gift free of all restrictions. In the expression commonly used in the transplant community, it is "a gift to the world."

That is why so many white women are walking around with black women's hearts inside them—and vice versa, why so many Latinos are breathing through Asian lungs—and vice versa and why Muslim kidneys go to Jews and vice versa [2]. It is the glory of transplantation that it leaps over all the normal barriers between us: age, gender, nationality, color, religion, politics, wealth.

**21**

though a little sadly.

*The Results Are Positive for Both Sides in the Great Majority of Cases When Organ Donor…*

It's true that for many donor families the restrictions are not worrisome. They know they have done the right thing but want to put that phase of their life behind them: to get on with their lives as best they can and let the recipients do the same. Others, however, do care and some care a lot. They are full of questions. Was the young woman who got their daughter's heart able to marry the sweetheart who'd been so loyal to her throughout her long sickness? Was she able to have a baby? Did the athlete who could not get out of a wheelchair take up sports again? Can the blind

Similarly the views of recipients vary just as widely. Some prefer not to hear from the donor family. They are all very, very grateful but they shrink from a relationship with people who might be too intense, too possessive. On the other hand, many others want nothing more in life than to meet and thank the people who rescued them. For those people getting to know the donor family can save them from a lifetime of unease. All recipients of deceased donors know they are alive only because someone else died. Many harbor feelings of guilt. They suppress those feelings but the best cure is to receive a letter from the donor family or hear them say, "We hope you will have a long and happy life. We want our gift to be as valuable

For Maggie and me there is nothing theoretical about this. Having met all seven of Nicholas' recipients has enriched all our lives, theirs as well as ours. We can hear about or see for ourselves lives developing that would have ended long ago and they can see we do not hold it against them that they are enjoying themselves while Nicholas is dead. They know instead that nothing gives us more pleasure than their

After 26 years only two have died, though one is back on dialysis and another needed a second corneal transplant. You already know about Andrea, the heart recipient who died after 22 years, though even then the final cause of death was respiratory failure: his heart (Nicholas' heart!) was beating strongly to the very end. That was a sad day but I have to say neither Maggie nor I felt any of the secondary grief some psychologists warn about. It never occurred to us that we were losing Nicholas again. Our sadness was for the Andrea we had watched grow up from boyhood to manhood and who had finally succumbed because his body had been

So let me instead tell you about one of the five who is still living: Maria Pia Pedala, a 19-year old from Sicily who was in her final coma from liver failure the very day Nicholas died. "We had given up on her," her doctor told us. With a new liver she quickly bounced back to good health, married two years later and two years after that had a baby boy, something that at one time was unthinkable. She called him Nicholas and spelt the American way rather than the Italian Nicola. You imagine what pleasure

After all she had gone through Maria Pia was understandably nervous when her Nicholas was a baby. She comforted herself by picturing our Nicholas standing on guard, keeping him safe. The family called our son Big Nicholas, the baby Little Nicholas. Now Little Nicholas is fit enough in a family with a long history of liver disease to be training as a non-commissioned officer in the Italian navy. He is a tall, slender, handsome young man and next to him our seven-year old would be a little shrimp. But, whenever Maggie and I meet or write to Maria Pia and her husband, Salvatore, one of us usually mentions the Big Nicholas story and we all smile,

undercut by his debilitating heart troubles when he was a child.

that gave us. I always hope many people will ask him how he got his name.

*DOI: http://dx.doi.org/10.5772/intechopen.93544*

mother now see her baby's face?

**4. Meeting our son's recipients was uplifting**

as possible."

being healthy and happy.

*The Results Are Positive for Both Sides in the Great Majority of Cases When Organ Donor… DOI: http://dx.doi.org/10.5772/intechopen.93544*

It's true that for many donor families the restrictions are not worrisome. They know they have done the right thing but want to put that phase of their life behind them: to get on with their lives as best they can and let the recipients do the same. Others, however, do care and some care a lot. They are full of questions. Was the young woman who got their daughter's heart able to marry the sweetheart who'd been so loyal to her throughout her long sickness? Was she able to have a baby? Did the athlete who could not get out of a wheelchair take up sports again? Can the blind mother now see her baby's face?

Similarly the views of recipients vary just as widely. Some prefer not to hear from the donor family. They are all very, very grateful but they shrink from a relationship with people who might be too intense, too possessive. On the other hand, many others want nothing more in life than to meet and thank the people who rescued them. For those people getting to know the donor family can save them from a lifetime of unease. All recipients of deceased donors know they are alive only because someone else died. Many harbor feelings of guilt. They suppress those feelings but the best cure is to receive a letter from the donor family or hear them say, "We hope you will have a long and happy life. We want our gift to be as valuable as possible."

#### **4. Meeting our son's recipients was uplifting**

For Maggie and me there is nothing theoretical about this. Having met all seven of Nicholas' recipients has enriched all our lives, theirs as well as ours. We can hear about or see for ourselves lives developing that would have ended long ago and they can see we do not hold it against them that they are enjoying themselves while Nicholas is dead. They know instead that nothing gives us more pleasure than their being healthy and happy.

After 26 years only two have died, though one is back on dialysis and another needed a second corneal transplant. You already know about Andrea, the heart recipient who died after 22 years, though even then the final cause of death was respiratory failure: his heart (Nicholas' heart!) was beating strongly to the very end. That was a sad day but I have to say neither Maggie nor I felt any of the secondary grief some psychologists warn about. It never occurred to us that we were losing Nicholas again. Our sadness was for the Andrea we had watched grow up from boyhood to manhood and who had finally succumbed because his body had been undercut by his debilitating heart troubles when he was a child.

So let me instead tell you about one of the five who is still living: Maria Pia Pedala, a 19-year old from Sicily who was in her final coma from liver failure the very day Nicholas died. "We had given up on her," her doctor told us. With a new liver she quickly bounced back to good health, married two years later and two years after that had a baby boy, something that at one time was unthinkable. She called him Nicholas and spelt the American way rather than the Italian Nicola. You imagine what pleasure that gave us. I always hope many people will ask him how he got his name.

After all she had gone through Maria Pia was understandably nervous when her Nicholas was a baby. She comforted herself by picturing our Nicholas standing on guard, keeping him safe. The family called our son Big Nicholas, the baby Little Nicholas. Now Little Nicholas is fit enough in a family with a long history of liver disease to be training as a non-commissioned officer in the Italian navy. He is a tall, slender, handsome young man and next to him our seven-year old would be a little shrimp. But, whenever Maggie and I meet or write to Maria Pia and her husband, Salvatore, one of us usually mentions the Big Nicholas story and we all smile, though a little sadly.

*Bioethics in Medicine and Society*

it is too late.

**recipients**

could not even visualize.

recipients for money?

"a gift to the world."

most in need and that is what they want.

age, gender, nationality, color, religion, politics, wealth.

hospital to find someone they love, often painfully young and until then perfectly healthy, is dead or dying; their minds are in turmoil; they cling to the thought that there may still be hope. In those circumstances to be asked there and then if they will donate the organs is too much for many people: they say "no" and often realize only the next day that they have turned down what will probably be the best opportunity they will ever have to make the world a better place. But by then

**3. Donor families who want to know more about their loved one's** 

much to go on to build a picture of what the recipients are like.

They also wanted to protect the families from unwelcome publicity.

Of the donor families whom we have met across the world virtually every one of them says what we say: that donating was the one uplifting thing to come out of a time when everything else was empty of meaning. Even so, for many of them there is a feeling of incompleteness because in many countries they are allowed to learn only a few sparse details about the recipients: how old they are, whether the transplants were successful, what organs were used. That's all. It's quite impersonal, nothing

They have to imagine it—and what they imagine can be wildly wrong. In a few months they do not know how the recipients are doing, even whether they are still alive. It's shabby treatment (isn't it?) for people who resisted an almost overwhelming instinct to turn inward in sorrow and bitterness and instead put their grief on hold long enough to help people in desperate need whom they had never met and

Originally the restrictions were imposed for the best of reasons. When transplantation was in its infancy and half the cases were unsuccessful, those who set the rules thought it would be heart-breaking for donor families to find their decision, which had often caused them such an emotional wrench, had after all been in vain.

As the treatments matured, and successful transplants became the norm, the objections to any form of contact between the two sets of families became more strained and to smack more of authority wanting to impose control than for the benefit of the families. Suppose the donor family does not like the recipients, opponents asked, will they wish they had not agreed to donate? What if a strongly religious family of donors finds out the recipients are of a different faith? What if the donor family had lost a child and had set its heart on saving other children but instead finds all the organs went to grown ups? Suppose a donor family asked the

These fears, though they are still cited, were always hugely overblown. Families who are willing to donate have already been through a crushing experience and few of them doubt that saving the lives of several other people is far more important than whether those people have a lifestyle similar to their own. By the act of signing the consent form they know they have agreed the organs will go to those who are

Indeed, it is one of the inspiring aspects of organ donation that it is a gift free of all restrictions. In the expression commonly used in the transplant community, it is

That is why so many white women are walking around with black women's hearts inside them—and vice versa, why so many Latinos are breathing through Asian lungs—and vice versa and why Muslim kidneys go to Jews and vice versa [2]. It is the glory of transplantation that it leaps over all the normal barriers between us:

**20**
