Summer of the Heart: Saving Alexandre

Overview

A father’s heart-rending account of his baby’s extraordinary will to live

When Alexandre Julius Adams was born – at Gatineau Hospital, in the summer of 1998 – he seemed a healthy little boy. When he had trouble breast-feeding, his parents assumed it was normal. As the days passed, however, he grew dehydrated, inconsolable, and then listless. His parents phoned a government hotline. A nurse suggested they take...
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Overview

A father’s heart-rending account of his baby’s extraordinary will to live

When Alexandre Julius Adams was born – at Gatineau Hospital, in the summer of 1998 – he seemed a healthy little boy. When he had trouble breast-feeding, his parents assumed it was normal. As the days passed, however, he grew dehydrated, inconsolable, and then listless. His parents phoned a government hotline. A nurse suggested they take the baby to emergency.

So began an extraordinary life-and-death saga. Alexandre was diagnosed with a congenital heart defect, and only a combination of good fortune, superb medical expertise, and inner resilience enabled him to survive. “He was on a knife’s edge in there,” the anesthesiologist grimly told Alexandre’s father after the first operation. “A knife’s edge.”

This book is a father’s beautifully terse, stirring account of the saving of his son. At times it reads like an episode of ER – Adams chronicles the intricate, brusque mechanics by which a critically ill infant is sustained. Pediatric cardiology is deftly explained, and the history of our understanding of human anatomy is woven in.

But this is a deeply personal story, and it occasions as many chuckles as tears. The numbing strain felt by Paul and Suzanne is almost unbearable; their lives become an emotional roller coaster there is no stepping off. Alexandre’s will to live is stirring – “Some children have it,” a doctor shrugs, “and some don’t.” The grueling experience strains their relationship in unexpected ways before ultimately strengthening it.

Adams will always be haunted by the knowledge that Alexandre’s survival was, in some ways, an accident of timing. Had he been born a couple of years earlier, the technology that saved him would not have been invented. If he’d been born a couple of years later, health-care cutbacks would probably have cost him his life.

Summer of the Heart will touch every reader, for it reminds us again and again what’s truly important.

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Product Details

  • ISBN-13: 9781551990934
  • Publisher: Macfarlane, Walter & Ross
  • Publication date: 3/25/2003
  • Pages: 208
  • Product dimensions: 5.74 (w) x 8.76 (h) x 0.73 (d)

Meet the Author

Paul Adams has worked extensively in television and radio, and is now the Middle East correspondent for The Globe and Mail. Summer of the Heart is his first book.
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Interviews & Essays

Having your child diagnosed with such a serious illness must be every parent’s worst nightmare. What made you decide to write a book about such a harrowing and deeply personal experience?

I didn’t start to think about it until a year after he was ill. I couldn’t get the experience out of my head. I’d be at work, sitting on a plane, or trying to sleep at night but my mind was occupied. I still had unanswered questions and unresolved feelings. I thought that writing about it would help; my intention was not necessarily to publish it at first, but more to work through these issues in my own mind.


How difficult was it for you as a journalist, who normally covers politicians, elections and wars, to write about your own experiences and those of the people closest to you?

It was harder than I thought. I have written for a living all my life. It didn’t occur to me that this would be so different. The early stages were the hardest, trying to find my voice–the distance of a journalist’s approach was ingrained. Often I was unwilling to be honest with myself about how I felt, and I would write a joke or strike a false note because I was having trouble revealing my own thoughts and feelings and being honest with myself. It was a very hard thing to do. But it didn’t seem worth writing unless it was a truthful as it could be.


Who read your manuscript first?

Of course my wife Suzanne was the first to see portions of the manuscript when I first started writing. At first I thought it would be difficult for Suzanne and I was anxious when she sat down and read it, because not everything isflattering, we had some hard times, we were disagreeable, and we were not a perfect couple. She is also a much more private person than I am. I was relieved when it turned out she was so positive — enthusiastic, even -- about telling our story. Still, she often remembered things differently, and that turned out be an enormous help in retelling the story.


Alexandre was diagnosed with a congenital heart defect. What does this mean?

Children who are diagnosed with congenital heart defects can have it for a variety of reasons, it can also be hereditary. In Alexandre’s case, it doesn’t mean that his problem was genetic, but only that he was born with it. In his case there were two problems, the first was that he had holes in his heart. There were three perforations between ventricles, so that the blood was sloshing back and forth between them, and the oxygenated blood was mixing with the oxygen depleted blood. He was slowly being strangled because he was not getting blood in the right places. But the biggest problem that he had was a narrowing of the aorta (the big artery coming out of the heart) as it turned to take blood to the lower part of his body, so the lower organs were depleted of blood, while at the same time his upper body was getting too much blood, and he was in danger of having a stroke because of too much blood to his brain.


Tell me about the day he fell ill.

Ever since he was born, Alexandre had never been well. He had never fed well–he had problems breast-feeding, like lots of kids do. But on the fifteenth day he stopped feeding altogether, and he began to look gray, and became listless, though he had no fever. Suzanne insisted that we take him to emergency. They categorized us as semi-urgent and we waited for an hour. When the doctor saw him, he immediately diagnosed him with a serious heart disorder. We were at Gatineau hospital in Quebec, just across the river from Ottawa. Alexandre was sent by ambulance across the river to Ottawa for more tests. Suzanne went along with him. About halfway there, the nurse said something to the ambulance driver, he turned on the siren and began to race through he streets. By the time he reached the hospital, he was in congestive heart failure and vascular collapse, which means the blood vessels were collapsing, and it was very difficult for them to get the needles in.


You say in the book that some of the medical staff described Alexandre as a "fighter". What do you think they meant by that?

That is something that really struck us because he was our first child, and so this was our first experience with a gravely ill infant. He simply survived one assault after another, not only the heart failure in the ambulance, but the next day he also suffered a heart attack on the operating table. He would always spring back; there was just something in him. I’ve talked to some of the doctors about this, and many of them have this belief that some children have something in them, part of their character, personality or spirit, a kind of strength that helps them get through it. The doctors believe it’s a very important factor in which children live and which children die in these situations.


You say in the book that you are not a religious person, and yet when Alexandre appeared to be dying, you describe a powerful impulse to have him baptized. Can you tell me about that?

This came as a real surprise to me. I thought I had left my Catholic upbringing behind years ago. It’s not unusual for people in these situations to turn to religion for comfort, but I had never thought that I would. We were asked by the doctors “do you want a priest”–which is an unimaginably difficult thing to hear–and our immediate reaction was no. Hours passed and that first night he seemed to be dying. I felt the need for a ceremony, for that acknowledgement. I wanted the power of a religious ceremony to be a part of his brief life. Suzanne thought it was a mistake. At the baptism, Alexandre had been given dopamine and was unconscious. He was being ventilated and it was jerking his chest in and out. Suzanne felt that it seemed like the last rites, but for me it was an overwhelming impulse. I am certain that Suzanne regrets it. For her it made an already terrible torment even worse. I would say that I don’t regret it, but if I had to face that decision again, out of deference to Suzanne I might not push the way that I did.


Your father is an obstetrician, and was at your side for much of Alexandre’s treatment. How do you think this affected your perception of the doctor’s who were treating your child?

I think that coming from a medical family I am inclined to be more trusting than others would be of doctors, which can be a good thing if you have a good doctor. It was a wonderful thing to have my father there, someone who could explain things to us. One of the problems is you can have trouble absorbing all the information the doctors are giving you because you are in a state of shock and emotional disequilibrium, sometimes you don’t understand what they are saying until the second or third time. Having my father around helped because he did hear, and he understood all the terminology. Also he could answer the questions that would occur to us ten minutes after the doctors were gone. It was a tremendous asset to have him there with us.


The strain of Alexandre’s illness put a lot of pressure on your marriage, which eventually made the bond between you and your wife stronger. What advice would you have for other couples who might find themselves under a similar strain?

Understand how enormous the pressures are on you and your spouse. Whatever your imaginings of how good a parent or spouse you are, you won’t live up to it. In deepest crisis we performed well, we were able to make quick decisions without too much aggravation–people remarked on how cool we seemed under great pressure. It was in the weeks and months following that the strain took its toll on our relationship. We found ourselves arguing over the little things, we had no difficulty making big decisions; it was the small ones that caused us trouble. We weren’t as tolerant of one another’s suffering as we should have been, we should have allowed each other room to vent, it might be hurtful but it’s a struggle. You can’t read about this in an advice column, you just have to struggle through, but its part of the reality of having a very sick child.


In your book, you write about how many of the doctors and nurses were saviors in more way than one, both for Alexandre and for you as an anxious parent. Can you talk a bit about this?

Doctors do have this god-like position; they hold your child’s life in their hands. The doctors who cared for Alexandre did save his life, but stepping back from it and actually going in to see the surgery, you recognize that they too are frail human beings. Surgery is messy business. It’s not molecular physics, it doesn’t have a rigid set of rules and outcomes, and it’s not always going to happen the same way. There’s chance, skill, and human uncertainty. Particularly with cardiac surgery in infants, they are experimenting on your child, whether you realize it or not. I didn’t realize it at the time–thank god–but looking back it was a shock how uncertain it all is. It’s both an art and a science, and it’s more of an art than we imagine.
I attended a Pediatric Cardiology conference long after Alexandre’s surgeries, and there was one lecture where the question was asked “Cardiac Surgeons: cowboys or conservatives?” the doctor’s answer was that they are somewhere in between. I think most of us would be shocked to think of the surgeon who has their baby on the operating table as a cowboy. But pediatric cardiac surgery is still a medical frontier to a far greater degree than a parent of a sick child would like to believe.


You later witnessed a heart operation on another little boy — performed by the same surgeon who operated on Alexandre. What was that like?

It was a very strange, profound experience. I had never seen a scalpel cutting in to a human being before, or smelled the smoke as the electric scalpel slides through the flesh. I also didn’t expect to see the blood spurting from the heart the way it did. It was a revelation how wet the process was. The child is draped with surgical draperies in such a way that you almost forget that there’s a child underneath that is someone’s boy or girl. Dr. Weerasena, the surgeon, actually told me that it was important not to get too attached. It’s a very scary business, and if the surgeons thought too hard about what they were doing, and the consequences of success or failure, maybe they’d loose their nerve.


You also say that Alexandre likely would not have lived had he been born after health care cutbacks crippled local hospitals. In what ways do you think the health care cutbacks that happened after your experience affected the staff’s ability to care for other patients and their families?

The actual surgical clinic in which Alexandre was operated upon is being shut down. The government has said that the children will be cared for in other facilities. I am convinced that had it not been there he’d have died–he barely survived the ambulance ride across the Ottawa River. He certainly would not have survived a MedEvac to Sick Kids in Toronto. When I asked how he had deteriorated so quickly, his surgeon said “these kids don’t travel well.” With this kind of heart defect, infants would arrive in Alexandre’s condition or worse. And worse means dead–Alexandre was only on the threshold when he arrived. It’s not only financially impossible to have clinics everywhere, these surgical units also need a volume of operations in order to perform well, and you simply can’t have them in every city and town across the country. But the fact is two or three years later he would have died. It’s a fact. And it’s a mystery I suppose.


Happily, Alexandre has thrived after his surgeries, and is now a healthy four-year-old. What have you told him about his first months of life? How does his illness affect your family today?

He doesn’t know a great deal about it. He knows he was sick, and he has to go in to the hospital for heart check-ups so he knows there’s an issue there. He talks about his heart like other four-year olds. “My heart doesn’t want to go to the park today” “My heart doesn’t like it when you tell me not to do that.” He says “My heart pushes the water around to make me feel better.” It’s a much larger thing in Suzanne’s life and mine than it is in his. I don’t think he’s ever noticed his scar.


What resources would you recommend to parents of children with congenital heart defects?

First of all, your family and friends. It may seem obvious but you’ll need all the emotional support you can get. Friends should never underestimate the power of small gestures. Hospitals also have support groups, literature and counseling, but the point is to use them. There is a very powerful tendency to draw into yourself and push people away to some extent. This is the wrong thing to do. The right thing to do is to lean on your parents, your brothers and sisters, and your friends. There is a fair amount of help available out there; I am just not sure if people know how to get it when they need it most.


After Alexandre’s health improved, you and your family moved to Tel Aviv. Do you think that Alexandre’s illness helped you and your wife pursue your dreams with new zest? Are there other ways in which Alexandre’s will to live inspired you?

When we moved here when Alexandre was three, in a way we were resuming a path that we had abandoned. In that sense we are back on track. Professionally it has made a difference. I am much more conscious than I might have been about the plight of children, not just with heart problems but suffering in so many ways. Alexandre had an unusually bad disease and unusually good care. But here we see violence, disease and deprivation that is largely avoidable without extraordinary effort. It affects me when I see a suicide bombing that kills a grandmother and her two grandchildren–one in a stroller–blown-up outside an ice cream parlor. Or a two-year old Palestinian boy who was shot through a window - either by accident or recklessness. Sadly these things happen every day here. The experience of the fear of loss makes me more conscious of what that means to other people.
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