The Bottom Line
By Amy Kuebelbeck; 174 pages. From the cover: "Two of the most primal parental instincts are to keep your child alive and to protect your child from unnecessary pain. Those instincts usually do not collide. With our baby, they did."
When Amy Kuebelbeck was 5-1/2 months pregnant, the child she was carrying was diagnosed with hypoplastic left heart syndrome, a condition in which the left side of the heart does not develop. This moving memoir tells of the choices she and her husband made to spare their child painful medical procedures and to celebrate the life he had, however brief.
Pros
- A quick, can't-put-it-down read
- Offers interesting thoughts on the uses of extreme medical intervention
- Following a family through a worst-case scenario may shed light on less severe situations
- Presents a model for how friends and family members can be supportive
- A compelling argument for the value of even the briefest and most compromised lives
Cons
- Those who prefer how-tos to memoirs may find this slight
- If you've chosen extreme medical intervention for your child, the author's views may hurt
- There's a good chance that it's just going to break your heart
Description
- Chapter 1: The News
- Chapter 2: The Decision
- Chapter 3: Waiting With Gabriel
- Chapter 4: Hello
- Chapter 5: Goodbye
- Epilogue
- Acknowledgments
- Endnotes
Guide Review - Book Review: Waiting With Gabriel - A Story of Cherishing a Baby's Brief Life
"'You have a beautiful baby,' the ultrasound technician said quietly. She was studying the flickering images on her screen, staring intently at the shadows of the tiny heart. I think she had already seen that our baby was going to die."
That's the opening paragraph of Waiting With Gabriel, and you can tell right off the bat that this is a story that will give your own poor heart a workout.
The birth of a child should be a joyous occasion, but for babies with hypoplastic left heart syndrome, it's more likely to be a tragic one. These little ones with malformed hearts can survive just fine in the womb, but not very well outside of it. While reconstructive surgery and heart transplants can be performed, they are far from foolproof and may be more traumatic for tiny patients than their success rate warrants.
That leaves parents like Kuebelbeck with the painful choice of pursuing life at all costs or accepting death that comes too soon. Thanks to an early diagnosis, Gabriel's family knew that the time they had with him before birth, active and thriving inside his mom's body, was likely to be the best and longest time they'd spend together. And so they resolved to make the most of it, and give their ailing baby a warm welcome.
Their decision to forego extraordinary measures may rankle those who have made different choices. While it's clear that no judgment is intended, the strength of the author's conviction that treatments would be torture may feel that way to parents who have opted for them.
As it turned out, Gabriel would not have been a candidate for those procedures, and his death came shortly after his birth. The fact that he was able to affect so many lives so deeply in that time is a testament to the power of the weakest among us, and of those who open hearts to them.
