As a pediatric critical care physician and an ethicist, Jane Lee was accustomed to caring for children with a range of serious conditions and disabilities, and felt comfortable helping families navigate decision-making for these children. When a complicated delivery leaves her second child with a severe brain injury, she finds that everything she learned about disability and personhood as a physician and ethicist is no help as a parent.

This book allows the reader to walk alongside the author as she struggles to bond with and love her child, as she reconciles what is happening at home with her ongoing role as a physician to patients and families in similar circumstances, and as she shifts from the medical perspective of disability that sees an impaired body to the mother’s perspective that sees the beauty and value in the person that is her child.
A fantastic addition to my kindle

‘’I needed to be with her. Not because I felt a deep love or bond (to be honest, I felt neither) but rather because that is what I thought a good parent would do, and I needed to feel like a good parent.’’

Dr. Kimberly Jane Lee is a paediatric critical care physician, who is used to seeing absolute tragedies on an almost daily base. As a physician she is prepared to treat these children, take critical stands in decision-making, and to a certain extend support their families. However, when her own personal life takes a turn, she realises only how little real empathy she was able to bring up.

Catastrophic Rupture is an emotional, honest, raw and at times heartbreaking memoir in which the author describes her emotional, financial and practical difficulties raising her second child that’s born with severe brain damage after a traumatic child birth.

‘’She wasn’t terribly sick, but she certainly wasn’t well. Not dying, not really living.’’

With Catastrophic Rupture, dr. Lee provides a highly introspective work that may benefit many parents (or other relatives) that struggle with raising a child with severe disabilities. How does one deal with guilt? With not feeling like you can’t simply love your child? With practical difficulties, such as insurance not covering basic care necessities? With legal procedures against a hospital? These are only some of the questions dr. Lee discusses in a beautiful way without ever getting overly emotional.

In addition, the author describes many lessons she took as a physician, which I believe may highly benefit many of her colleagues - including myself. How can we improve our communication with our patients and their families? How can we be more empathic? How should we reflect on our own views versus the views of the family, especially when these lead to conflicts in treatment decisions? Two quotes that really stand out:

‘’Upon learning of this disconnect, I realised that much of what we say in medicine has another laying of meaning. If we want to communicate well, it is not enough to make sure patients and families understand the words we are using. We need to go a step further and make sure they understand the implications of those words.’’

And:
‘’Communication gets a lot of attention in medicine, in large part because we physicians are notoriously bad at it. We use words and abbreviations that nobody understands, we’re blunt and brusque when we should be empathetic and compassionate, we deliver orders that are unclear and imprecise in a manner that discourages questions or attempts at clarification’’.

Throughout the book the author relates to her personal struggles, which must be so relatable for many a parent raising a child with disabilities. We feel the insecurities, the doubts, the pain, all the conflicting emotions. But we also get to meet Josephine. Who lives life in her own beautiful way, who achieves her own incredible milestones, who teaches us some very important live lessons.. We see Josephine through the eyes of medical diagnosis, of a struggling mother, of a loving father, and above all: through the eyes of her classmates. Who all love her just for who she is: a funny kind soul with her own special character.

Like dr. Lee describes: ‘’We are all multifaceted, but for children like Josephine, it seems the facets are sharper and more distinct. This can lead people to believe that the side they see is the only side that exists. … But I know now that our future will also hold wondrous moments of simple joy. Moments whose beauty I can only appreciate now, after learning that sometimes the best answer to three minus three is purple.

An incredible work. And to end on another amazing note: all author profits of this book are donated to the Complex Care Program of the Children’s Wisconsin and the Medical Humanities Program at the Medical College of Wisconsin.

Equally honest and heartfelt, this memoir of hope and healing will change how you look at life. I am in awe of Jane and how she has found a way to share her experiences in such a transformative way, pairing breathtaking honesty without judgment. Her words have changed the way I think not only about my profession (in pediatric critical care), but about humanity in general. I think my favorite line bucks up against the “everything happens for a reason” sentiment saying NO: “So while I don’t think Josephine’s brain injury happened for a reason whose meaning I was meant to discover, I do think the experience has meaning.” Whoa - that’s a lightbulb moment right there. Despite not personally experiencing what Jane describes, these pages ooze empathy and somehow I too feel seen. Thank you Jane, for sharing your story.

“When I Was Simply a Doctor” is the first chapter in Catastrophic Rupture, a thought provoking, heart breaking memoir describing the rupture of heart, body and life.

K. Jane Lee is a Pediatric Intensive Care Unit Physician who specializes in bioethics. She’s been trained to deal with parents of gravely injured children and those of children with neurological deficits. She’s also a mother. She and her husband Jason have a son and are expecting a daughter, Josephine. The decision Jane makes to have a vaginal birth instead of a second cesarean will move her into an unexpected future.

How she learns to accept that uncertain future is the main theme of Catastrophic Rupture. Jane and Jason must fight insurance companies for needed benefits, deal with lawyers, handle home medical care and begin to form the family they didn’t plan to have. Jane writes beautifully and describes how her feelings change toward Jo. Her descriptions of how people, strangers, classmates, doctors and therapists,“see” her daughter are especially poignant. What Jane wants is for Josephine is “that she feels loved - deeply, fiercely loved, that she feels valued and expected and known, that she feels fulfillment and contentment with her life”. Isn’t that what all parents want for their children? Thank you, Jane Lee.

Thank you to NetGalley,

Jane Lee is a Paediatric Intensive Care Unit Physician and she is comfortable dealing with medically complex cases. However, when her daughter is born there are complications during her birth and she sustains a severe brain injury. Her daughter is not verbal, has limited motor skills, cannot make eye contact or smile and has a long list of medical issues. Suddenly Jane is not approaching a medically complex child as a physician but as a parent. This is her journey as a parent and how it ultimately changes her approach as a physician.

This book was very well written. It was honest and written in a way that was accessible to the reader allowing them to sympathize and understand her perspective and her story. It written in a way that was able to give me a perspective into a world/situation that I have never been exposed to first hand. I think that this would be a good book for anyone, but especially parents with medically complex or non-verbal children. All in all a great read with a new perspective.