Book a moving testament to a parent's love

Written by Rebekah Benoit
Wednesday, 22 February 2012 10:19

Immortal Bird by Doron WeberWhen expectant parents are anticipating the birth of a child, and they’re asked, “Which do you want? A boy or a girl?” most parents give the stock answer. “We don’t care, as long as it’s healthy.” There’s nothing parents want more for their children than a happy, healthy childhood. When things don’t go according to plan, it really is a parent’s worst nightmare.

This is what parents Shealagh and Doron Weber were faced with shortly after the birth of firstborn son Damon. The chubby newborn seemed healthy enough at birth but within days, it became evident that something was terribly wrong with the baby.

Tests revealed a life-threatening congenital heart defect—baby Damon’s heart was missing the left ventricle which returns oxygen-starved blood back to the lungs. A lifesaving surgery called the Fontan procedure saved the baby’s life and returned him to health, and the relieved parents were sent home, reassured by doctors that Damon could now expect to live a normal, healthy life.

But it’s the lot of such parents to live a life of heightened vigilance, always watching their child for any sign of a returning ailment, and when Damon, now a young man of 14 with a shock of rich red hair and a flair for acting, shows signs that something may be wrong, his parents are quick to act.

At first, the signs are subtle, something only a watchful parent might notice. Damon doesn’t seem to be growing—his height remains a stubborn 56 inches, making him the shortest child in his class.

His belly has retained a round toddler chubbiness, despite his small size, and Damon is pallid and easily tired. The concerned parents check with Damon’s longtime cardiologist, who assures them that everything is fine.

But like any parent with a child who has medical issues, the Webers have learned to be advocates for Damon, particularly his father. The family persists, seeking out a second opinion, and discover that their child’s swollen belly and fatigue aren’t due to puberty—they’re due to an enlarged liver, the result of a rare but potentially fatal condition called PLE, which affects up to 10 per cent of people who have undergone Damon’s Fontan procedure. PLE, which causes the body to leak protein from the gut, drastically slows growth and, without treatment, can cause sufferers to literally waste away.

So begins the Webers’ medical odyssey. Doron begins searching out every possible medical treatment for Damon’s rare disease, beginning with the least invasive and, as each of these treatments results in eventual failure, moving on to the next.

Eventually, it becomes apparent that Damon needs a heart transplant, a terrifying procedure but one that the Webers understand is their son’s last hope for a normal, healthy life.

Throughout the book, I was so impressed with Doron Weber’s no-nonsense stand as his son’s advocate against a medical system that is deeply flawed.

Having watched my own sister stand up to medical professionals on behalf of her special-needs son, I’m appreciative of the courage and the dedication parents of sick kids must have to advocate for their kids, how they become virtual medical experts on rare syndromes that many residents and doctors, even specialists, are largely unfamiliar with, and how they fight for their kids with everything they have.

Doron Weber never gave up, no matter how many doctors tried to brush him off or discourage him, and he never stopped demanding accountability and the best treatment for his son.

I also loved how this book truly honoured the spirit of a remarkable child, a 14-year-old with rare insight and a love of theatre and books, a small sage in a child-sized body. Though Damon’s life was short, his father paints a truly beautiful picture of just who Damon was, and this parent’s tribute to his beloved child, made all the more poignant by his family’s grief and outrage at how his life ended, is deeply moving.

The final moments of Damon’s life are particularly heartrending, and though I’m rarely moved to tears by books or movies, I found myself weeping along with the Webers, my deepest maternal instincts moved by their impassioned fight to save a dying child.

Weber’s Immortal Bird is an unforgettable memoir and a moving testament to a parent’s love. Read this one!

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