Both Sides of the White Coat: An Insider's Perspectives on the Critically Ill Child

The moving book covers seven years of fear, uncertainty, and hardship as a father and a mother, both physicians, cope with a child’s life-threatening illness (congenital muscular dystrophy). Uplifting as well as demoralizing experiences with medical professionals are described. This book is for parents overwhelmed by a child’s illness and intimidated by the medical establishment and healthcare professionals—it is also for professionals who need to listen to this story.

"This book is the result of seven years of fear, uncertainty, and hardship as a family has attempted to cope with a child's unexpected life-threatening illness. This story differs from that of many other families coping with childhood illness in that we as parents already had intimate "insider" knowledge of serious illness. I was a specialist in critical care and pulmonary medicine when our son was born, while his mother Ruth was a practicing pediatrician. It was an ironic combination for two parents who were soon coping with their own newborn's critical condition.

The past seven years have seen our family rise from the depths of desperation to cautious optimism. Andrew currently is physically disabled with congenital muscular dystrophy but is as thriving and happy as any other seven-year-old boy. I have taken the insights gained through such an extraordinary combination of professional and personal experience and have created a guide for other parents overwhelmed by a child's illness and intimidated by the medical establishment. Parents will relate to our personal story, and will hopefully benefit from and be empowered by my insights as both a physician and parent.”

Chapter 1: The Intensive Care Unit
Chapter 2: Doctors: The Good, The Bad, and the Totally Incomprehensible
Chapter 3: Ethical Considerations
Chapter 4: The Child with a Disability
Chapter 5: Final Perspectives

Excerpt from Chapter 5: Final Perspectives

Confronting any serious illness and the ravages it may inflict such as chronic disability, physical discomfort, financial hardship, or terminal outlook should be regarded as nothing less than fighting a war. The enemy itself may be invisible, hidden within weakened muscles, malfunctioning brain cells, plugged bronchial tubes, or cancerous organs. The prisoners it takes, however, are all too evident and real.

Just as in actual war, the war against childhood illness is fought in the long run, with each individual battle or skirmish making a difference. For both my patients and my own son, victory is rarely achieved by attaining overwhelming conquest of illness or by vanquishing medical concerns in total. Victory is declared with very small gains, especially when the enemy poses such disheartening insurmountable obstacles daily. Some parents can declare victory in the war simply by getting out of bed in the morning and refusing to surrender hope. Andrew seizes a decisive victory in one small battle by rolling over one day by himself after years of frustration.

A patient of mine with ALS wishes desperately for a cure to be found so that one day she will get out of her wheelchair and walk. This from a woman who has become totally paralyzed and can’t breathe without a ventilator I want to assure her she has already conquered her disease without mercy. Even if she never moved a muscle again, she has risen above anything ALS could do to her by keeping her faith, by continuing to nurture her love of music and other hobbies, and by teaching the rest of us what true strength really is.

Likewise, there are parents every day who get up, lift their child from bed to wheelchair, feed their child through a tube instead of with utensils, and carry on with life. Victories of the spirit count as much in battle as anything else. That is not to say that more dramatic victories aren’t extremely uplifting - news of a negative x-ray after years of chemotherapy, pneumonia cured despite weakened muscles of breathing, successful treatment of a tumor considered incurable. At such times children and parents alike fire a virtual broadside against the enemy, and are able to carry on inspired into the next battle.

Overly dramatic? Not to the people who fight the battles daily, and who never have the luxury of assuming they’ll eventually emerge victorious. As a pulmonary physician I frequently see patients who can no longer see the light at the end of the tunnel as they confront lung cancer or end-stage emphysema. Sometimes all that can be said are words of honest recognition of the small but meaningful victories they have achieved in their own personal war.

As the parent of a child whose every independent movement is a triumph, I can appreciate the significance of small victories in each personal war against adversity. I just wish I could rotate off the front lines for a while…

Dr. Eveloff's story has a special power to instruct and enlighten physicians and parents. As a reader, I found myself emotionally exhausted. As the father of healthy children, I was horrified. As the parent of a son with a severe disability, I was comforted. As a psychologist who care for families and as a citizen of the planet, I am enriched and grateful for the author's courage and will to be heard.