Greetings and welcome to the final stop on the A Gift of Time Book Tour!
If you missed any of the previous stops on the tour, click here to get your map.
It has been an honor and a privilege for me to host this, my first, book tour with author and contributor participation here on Four of a Kind. It means a lot to me that this tour was for a book that I feel so passionately about and had the opportunity to contribute a small part of my own story to, A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief by Amy Kuebelbeck and Dr. Deborah L. Davis.
As I shared in the review I wrote for Exhale Literary Magazine, this newly published book (January 2011) was written by the authors of two successful and widely read books for parents who have lost children: Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life and Empty Cradle, Broken Heart: Surviving the Death of Your Baby. I read both of them during my family’s five year roller coaster ride through secondary infertility, pregnancy loss and neonatal death. They helped me to cope and to heal throughout our journey, especially before and after the birth and death of our second child, Molly, who was born and died in April 2008.
I wish A Gift of Time had existed when we got the diagnosis and prognosis for our baby girl early on in the second trimester of our pregnancy. I am pleased that it is now available as a resource for anyone going forward given diagnoses and prognoses that their unborn children may not live long before or after they are born.
It has been my pleasure to have the opportunity to get to know the authors of A Gift of Time through this process of hosting a book tour. I am grateful that they were willing and able to participate. The following questions were submitted by participants/contributors on this book tour, including myself, and I think you all will really enjoy Amy and Debbie’s thoughtful and interesting answers. I have color coded Amy’s answers in blue and Debbie’s in burgundy in effort to try to make this long and fascinating interview easier to follow. And now without further ado…
A Message from Amy and Debbie: First, we want to thank everyone involved in this tour. We are honored and delighted by the interest in our book. Second, if you are reading this because of a prenatal diagnosis that indicated your baby likely would die before or after birth, our hearts go out to you. We are so sorry that you need this book, but we sincerely hope it will be a comforting companion for you. You are not alone.
Question 1: How did you connect with one another in conceptualizing the need for this resource guide, and do you know of any OB/neonatology/perinatology programs likely to infuse the guiding principles outlined throughout this book in the training?
Amy: I read two of Debbie’s books avidly while I was pregnant: Empty Cradle, Broken Heart and Loving and Letting Go, which is directed at parents who choose to forgo aggressive medical intervention. Both were a great comfort to me. And as a writer I appreciated Debbie’s writing, because not all resources in this genre are well-written, even though they are well-meaning. When Waiting with Gabriel was nearing publication in 2003, I suggested that the publisher seek a “blurb,” or endorsement, from Debbie. I was delighted when she agreed. We connected in person at a 2004 conference on pregnancy and infant death. By that time I had been mulling the idea for this new book. Because I liked her format of extended quotes from parents in Empty Cradle and also because I thought this book would benefit from her expertise as a psychologist, I asked Debbie if she might want to collaborate. And here we are!
I don’t know yet of specific programs that have committed to using the new book in their training, but I have spoken at dozens of medical conferences across the U.S. and Canada and heard much interest in having a resource like this for caregivers. So I am confident that the book will find its way into some training programs.
Question 2: How did you determine which quotes to use throughout the book and where? Did you write the outline for the book first and then fill in the quotes or did the quotes drive the outline of the book?
Amy: Early on, we had a general idea of the structure of the book and knew that we wanted to take readers chronologically from the diagnosis through the rest of the pregnancy and saying hello and goodbye. We wrote our questionnaire based on that rough idea. As completed questionnaires came in and as I transcribed personal interviews, I looked at them with a journalist’s eye, highlighting passages that were especially well-phrased, that illustrated a common experience, or that provided a unique perspective. I copied all of those quotes into files for each chapter, and from there the quotes drove the outline of each chapter.
Question 3: Why did you use a lot of quotes from some contributors and a few from others? Did some contributors not answer all of the questions on your survey? Did the number of questions you used from contributors have to do with the time frame in which they were submitted and received and/or was it more about how certain contributors’ experiences fit in more with the intentions and vision you had for the book?
Amy: We are deeply grateful to all who generously shared their experiences with us through the questionnaire or personal interviews. The parents’ contributions were insightful, poignant, descriptive, heartbreaking, and wise. As I sorted through the hundreds of pages of beautiful submissions, as I mentioned above I was looking for passages that were phrased especially well, that illustrated common experiences, or that provided a unique perspective. For example, the idea of home funerals was not even on our radar until a parent wrote to us about it. As another example, we knew anecdotally that some parents feel pressured into terminating their pregnancy, but the sheer number of people who wrote about that was startling, so we used more of those quotes to illustrate the commonality of that experience. The timing of the responses was not a factor; in fact, we squeezed in a couple of late-arriving gems even as we were on final deadline.
As we’ve told the parents who participated in the book, we wish we could have used everything, but with well over 100 parents participating, of course that wasn’t possible. Not only did we have a firm word-count limit in our contract, we intentionally did not want a book that was simply an unedited collection of responses. That would have been difficult for readers to follow. Near the end of our writing, we had to cut 20,000 words — yes, 20,000! — from the manuscript in order to comply with our limit. Believe me, cutting each quote was difficult. We did pore over every word that was submitted (and wiped away many tears), and even if we didn’t quote particular passages, everything that was shared with us informed our writing and helped shape the final product. We think the entire book is a tribute in loving memory of their little ones, and we hope the parents will think so too.
Question 4: How did each of your experiences co-authoring A Gift of Time compare to each of your individual experiences writing Waiting with Gabriel and Empty Cradle Broken Heart
Debbie: For me, writing my two books was similar in many ways, largely because they are the same genre and overlapping topics. Empty Cradle was my first book, written after 8 years of research and writing on the topic. By the time I signed the book contract, the book was ready to simply flow out of me. But I was a novice writer back then, and relied heavily on a couple of skilled editors, one of whom was a bereaved mother herself. A Gift of Time had that familiar “flow” but it was less laborious to research and write, partly because I’ve vastly improved as a writer, and partly because everything I’ve learned about perinatal crisis, bereavement, and medical ethics came into play. But mostly, it was easier because Amy did 99% of the networking that had our mailbox filled with completed questionnaires from parents, and because Amy is the best writer and editor I’ve ever had the pleasure of working with, bar none! But this book still took more than 6 years from conception to publication. In my experience, that’s simply how long it takes to write a book. I need time to immerse myself in the topic, mull it over completely, and do thorough research in order to feel like I’m doing justice to the topic. I also need time to live my life at the same time. It is very important to me to find a good balance between work and play and all the responsibilities I juggle. Even as I urge my readers to seek emotional health and adjustment, I’m practicing what I preach. 🙂
Amy: One of the pleasures of writing A Gift of Time was that I was able to put my journalist’s hat back on. It was very different from writing a memoir, and it took much longer. It took time to recruit parent participants and sort through all the questionnaires and transcribed interviews, and collaborating with a co-author extends the process — as well as making it a better book. We even had lengthy phone conversations about using single words. (I live in St. Paul and Debbie lives in Denver.) In contrast, I wrote a draft of Waiting with Gabriel that was ready to send to prospective agents in three months. My personal story is not part of this new book, although of course it inspired and infused the entire project. In A Gift of Time, it was gratifying for me to try to give voice to parents’ experiences in a way that I hope will comfort other parents and inform as well as inspire their caregivers.
Question 5: How does it feel to know that so many parents, especially mothers, have found that reading all three of your books (Empty Cradle Broken Heart, Waiting with Gabriel and A Gift of Time) to be such helpful, healing and integral parts of their journeys through grief (from as early on as when they first receive their poor prenatal diagnosis and prognosis through the births and deaths of their babies and beyond)?
Debbie: I am honored and filled with gratitude that I’ve been able to create something that has made a positive difference to so many. I’m also indebted to all the parents who’ve contributed to these books, and from whom I’ve learned so much. Finally, I’m continually inspired by how parents can move through such a profound tragedy and emerge strengthened and wiser.
Amy: I am touched and humbled every time I hear that my books helped someone. I wrote Waiting with Gabriel not primarily to share my own story, which feels uncomfortably self-serving, but in hopes that at least one other person would feel less alone. I am sorry that others need to read these books, but I am grateful that these books are now available for them. It’s also been gratifying to work as an advocate for perinatal hospice, by speaking at medical conferences and by managing the http://perinatalhospice.org/ website and an e-mail list for caregivers. I often say that I am just a messenger for this important and beautiful model of care.
Question 6: When you conceived the idea for each of these books, did you think they would be as popular and successful as they have become or did you just believe that they needed to be written?
Debbie: I’ve never thought about whether any of my books would be popular or successful. I write because I see a gaping hole in the support available to bereaved parents, and I strive to fill it by writing books that can compassionately inform and accompany them on their emotional journey of grief, coping, adjustment, and healing.
Amy: It’s generous of you to say that the books have been popular and successful. This is an extremely tiny market niche, so success is relative! I did strongly believe that they needed to be written, and I’m so pleased that both of my publishers — first Loyola Press and now Johns Hopkins University Press — agreed. If A Gift of Time helps another parent feel less alone, it will be a success.
Question 7: Throughout A Gift of Time, beautiful tributes to physicians and other care providers who supported families’ decisions to continue pregnancies to term, while knowing the unborn child wouldn’t survive long after birth, are shared. However, this book also details personal testimonies of parents who encounter narrow-sighted and even dismissive and demeaning perspectives from physicians; particularly disturbing to me, personally, are the accounts of apparent ethical dissonancy in which parents are pressured to immediately terminate the pregnancy [because from a utilitarian perspective, the unborn baby’s life will offer no ‘value’]–and yet those same parents are eventually chastened by those very same physicians for later declining aggressive medical interventions and instead limiting measures to compassionate care after the child is born. (E.g., Amy’s story on p. 145 and Kathleen’s story on p. 160) Can you speak to the extent that physicians-in-training generally receive guidance in making well-formulated ethical decisions in complicated medical quandaries? Any additional insights from those shared in the book as to why this territory of medical ethics seems to be so heavily utilitarian in perspective? Are there any training models you’ve seen which you think are outstanding?
Debbie: This is an interesting, multi-faceted question, and I’ll try to answer it by giving you some insights into how the evolution of medical training and culture has led to the idea and growing acceptance of perinatal hospice. Medical training has to cover many topics in depth, and traditionally the focus has been on saving lives rather than preventive care (including the role of diet and exercise) or medical ethics (including end-of-life decision-making) or death and dying (including palliative, hospice, and bereavement care.) And traditionally, medical ethics has focused on “doing no harm” and weighing the risks and benefits of various options… not necessarily a bad thing, as the desire to reduce suffering is a real concern. Fortunately, both medical education and medical culture are changing, and during the past 40 years there has been a slow but significant shift toward attending to quality of life instead of just quantity. Practitioners and patients alike have become more interested in holistic care, including prevention, palliative medicine, hospice, and ethical, humane decisions. The hospice movement in particular has spawned increased acceptance of death as inevitable rather than a failure, and considering dying a valuable process that can be faced with dignity and comfort.
There is also a movement toward training practitioners to provide “relationship-based care,” that is, forming therapeutic, collaborative relationships with patients and responding compassionately to the holistic needs of patient and family. The University of Colorado Medical School (where I received training) has been at the forefront of training physicians to holistically attend to patients. Currently their curriculum focuses on how to relate to patients and families, not just as one year-long class, but woven into all four years and in every aspect of their education.
But even with top-notch training, it can be challenging to provide relationship-based care, partly because medical culture is still adjusting its priorities. Also, it’s natural for practitioners (and patients!) to have trouble dealing with death and dying and end-of-life medical decisions. It’s easier to focus on “fixing” rather than simply accompanying families who face death and bereavement. It’s the special practitioner who has a knack for relating to parents in crisis, attuning to every unique individual and helping them navigate the emotional terrain of medical ethics. Unfortunately, most practitioners don’t receive the ongoing support and training they need to navigate their own emotional terrain of facing death and dying or understanding the finer points of medical ethics and decision-making. So when you run into a practitioner who doesn’t “get it” or can’t provide the support you require, assume that s/he has the best of intentions, but simply doesn’t have the support or training to step up to the task.
Also understand that the development of medical ethics lags behind the development of medical technology. Imagine being trained in using “life-saving” techniques and equipment, but not trained in determining when and why they should be used, or how to talk to patients and families about heart-wrenching decisions.
Finally, we owe the development of perinatal hospice in part to the progress of neonatology; assertive parents; innovative physicians, nurses, midwives; and the development of guidelines by groups like the Colorado Collective for Medical Decisions (CCMD). In 1999, CCMD created medical decision-making guidelines for newborns, explicitly suggesting comfort care rather than intensive care for a baby whose prognosis is clearly grim, which made way for hospice as a permissible option for parents who want to continue their pregnancies after a life-limiting prenatal diagnosis. I’m optimistic that soon it will be standard care to offer perinatal hospice to these families.
Question 8: What do you wish more people (including lay people, those in ministry and those in the medical field) knew about and/or understood Perinatal Hospice? Why do you think that some obstetricians, maternal fetal medicine (MFM) specialists and hospital staff are more or less likely to embrace Perinatal Hospice?
Amy: I wish more people understood that continuing a pregnancy like this can be a beautiful, profoundly meaningful, and healing journey, and that perinatal hospice is a practical and compassionate way to walk with these families. It honors both the baby and the parents. I am optimistic that as awareness grows among caregivers and patients alike, and as more caregivers have the privilege of witnessing sacred moments with these families, acceptance and understanding will grow.
Question 9: What do you think we as bereaved parents can do to try to help raise awareness locally in our area obstetric practices, MFM offices and hospitals? What do you think we can do to help develop Perinatal Hospice programs and/or enhance those that exist already?
Debbie: Don’t reinvent the wheel. Get involved in bereavement programs that already exist, and from there, expand the mission to include perinatal hospice.
Amy:For starters, send them to http://perinatalhospice.org/ or print out pages from the website for them. The FAQ page has suggestions for starting a new program, and the Resources for Caregivers page has many links to relevant professional resources. Give them a copy of A Gift of Time — or several! — so the book can be given to the next patient who needs to make a decision.
Question 10: Do you have any advice for other parents who have lost babies who might consider writing memoir and trying to get it published?
Debbie: Writing a memoir can be a therapeutic experience, but in the vast majority of cases, it’s better kept as a personal, private endeavor. For one thing, if you keep it to yourself, you can be completely truthful knowing that you don’t have to protect yourself or others; this honesty improves its therapeutic value. Secondly, writing a memoir can be an affirming experience, but you’re the only one who needs to read it for it to be affirming. Finally, unsolicited memoirs have a terrible reputation in the publishing industry. Editors routinely wade through piles of manuscripts sent in by folks who are certain their life experience would be a riveting read for a wider audience, and certain that they can skillfully turn their story into a book. A memoir needs a skilled writer who is also a talented storyteller, who has a truly unique experience that plays out painfully but triumphantly, who can be painfully honest with her/himself and the reader, and who can reflect upon this experience in ways that shed light on much larger questions that many other humans are fascinated by. By all means, go for it, but only if writing and publishing a memoir is a dream of yours and you’re eager to devote yourself to the craft of writing, willing to bare your soul, and capable of being painfully honest. You also need to have a thick skin, to withstand rejection. After all, it’s up to the publishers and editors to judge whether you meet their standards. And even if you self-publish, it’s still up to the public as to whether it’s worth plunking down a few bucks. Fortunately these days, you can get your feet wet with blogging, so you might start there if you’re compelled to try your hand at writing a memoir.
Amy: I would first draw the distinction between writing and publishing. Writing can be therapeutic, and I highly recommend it. For me, my therapeutic writing was done via writing in a journal after our son was born. I never intended to share anything publicly. But after a year or so, I realized that I did feel a desire to share it after all. It seemed to me that because nothing like it had been published, and because I had searched so desperately for something while I was pregnant, perhaps my story wasn’t meant only for me. As a writer, I also wanted to try to tell this story in the best way that I could. At that point, I started re-writing the story from scratch without consulting my journal. That was a technique that I knew had been used by a Pulitzer Prize-winning journalist who had covered a very emotional story — she first wrote it in a journal for herself, and then she set the raw writings in her journal aside and started fresh to write it for her newspaper audience. I did a bit of research as well. I finished a draft in three months. I’m a former reporter for The Associated Press, so I know how to write fast. Plus I obviously knew my own story.
For parents who might like to write about their experiences, perhaps they would find writing for themselves, for their extended family, or on a blog or website to be meaningful as well as therapeutic. Parents who are interested in publishing a book will need to be aware that it is a daunting process. At minimum, a publisher would frankly assess whether a story is unique and skillfully written and whether it is marketable. Many publishers will not consider book proposals that are not represented by a literary agent, and it is sometimes said that landing an agent is even harder than landing a publisher. Finding a book agent is not like hiring a real estate agent; would-be authors essentially apply and compete for acceptance. It’s a sort of preliminary screening. I was fortunate that an agent accepted my proposal for Waiting with Gabriel rather quickly; he later told me that he rejects about 99 percent of the queries that cross his desk. (I continue to be grateful for his leap of faith.) Then comes the hard work of finding a publisher, made much more difficult by the subject matter. Books like this tend to have an exceedingly small audience, so publishers will be skeptical that it would be a smart investment of their resources. Self-publishing is another option, but that can cost thousands of dollars of your own money, and the reputation of the quality of self-published books is generally low so you might have to contend with that perception, in addition to bearing the responsibility for sales. Having said all that, if you have a fresh angle and are a good writer, start by getting a book such as Jeff Herman’s Guide to Book Publishers, Editors, & Literary Agents, and good luck!
Note from Kathy: There is also a great series of posts on author Melissa Ford’s blog Stirrup Queens called “How to Get a Book Published.” You can read the first post in the series here and then follow the links to subsequent posts on the sidebar of her blog, listed under the heading How To Get a Book Published Series.
Amy and Debbie asked that I share some great resources/links to websites that you may want to check out:
Perinatal Hospice website: http://perinatalhospice.org/
A Gift of Time on Facebook: http://facebook.com/agiftoftimebook
Waiting with Gabriel book website: http://waitingwithgabriel.com/
Waiting with Gabriel on Facebook: http://facebook.com/waitingwithgabriel
NICU Parenting website: http://nicuparenting.org/
I just found out about the NICU Parenting website myself for the first time today and could not wait to share it with my friend, that I asked you to pray for last week. As I shared in a previous post, an old friend of mine gave birth prematurely to twin boys on Wednesday, March 23 at 24 weeks gestation. Sadly one of my friend’s sons passed away the next day. Please continue to pray for my friend, her husband and their living son, who celebrated being one week old yesterday!
Thanks again to the authors of A Gift of Time Amy and Debbie for your time, as well as for your thoughtful and thorough answers to these questions! Thank you also to everyone who participated in one way or another in this A Gift of Time Book Tour, whether you read and followed along, commented, submitted questions for the authors and participants, posted on your blog, and/or contributed part of your story and experience to the book!