BY ORALEA MARQUARDT

Follow the Child: Planning and Having the Best End-of-Life Care for Your Child  (the new book by Sacha Langton-Gilks, published by Jessica Kingsley Publishers ) provides a space for a much needed, but rarely discussed topic – how to care for your child in the face of a life-limiting condition and in anticipation of their end-of-life.  For parents, like me, who had to navigate the many decision-making processes that accompany caring for a child with a life-limiting illness, the author’s honest and frank approach is like a breath of fresh air.

Through storytelling of her own experience with her son, DD, as well as through vignettes provided by other families, the author systematically presents concepts to consider with a terminal diagnosis, while never pushing any one approach.  The author addresses the practical concerns that many parents face when making end-of-life decisions (i.e. advance care planning, where to care for the child during medical crises, funeral arrangements) as well as the emotional aspects that go along with the difficult decisions.  The author’s ability to share some of her most intimate times with her son in a meaningful way is so very helpful.  Her openness about struggling with the emotions and challenges while caring for her son in his final days normalizes the experience for others who are living it.  As a fellow mother who had to make similar tough decisions for my son, I often found myself nodding in agreement when reading her statements and feeling relieved that I was not the only one to think some of the things you do when your child is dying.

One of the greatest treasures of the book is the resources that are woven through the various chapters.  The resources identified by the author are conveniently categorized in the “Resource” section of the book for easy access.  From my own personal experience, I can attest that navigating the system to make the difficult decisions was one of the most aggravating aspects of caring for my son.  I had to figure out on my own -often through trial and error- what was available for his care and what rights we had during difficult decisions.  The resource list provided in Follow the Child is a great starting point for parents to find the answers to their questions and to find the help that they need.

Some topics in the book may be difficult for many readers.  The author is quite aware of this and is sensitive to those readers by encouraging the reader to omit certain sections (i.e. The Last Hours [24-48 Hours Roughly]: How It Worked For Us) until they become more relevant to their experience.  My advice to parents reading this book is to be gentle with yourselves as you read it and take the time you need to digest the information.

The author’s passion about families having the right information and support for end-of-life care is evident throughout the book.  She addresses the many myths that exist in society about palliative care as well as the gaps in services that are currently present in health care systems for families caring for children with a life-limiting illness.  The author illustrates how differences in access to resources impact families by incorporating the experiences of the other families highlighted in the book.  Additionally, by incorporating the other families’ perspectives and their differences in decision-making, the author creates a deeper appreciation of the uniqueness of end-of -life planning.

I highly recommend Follow the Child as a resource for parents.  Follow the Child is also a valuable resource for the professionals who care for the children and families facing life-limiting illness.  It will provide professionals a better understanding of the needs and challenges of the families that they serve and the importance of having the difficult conversations.  Being able to compassionately start the many difficult conversations at end-of-life is integral to families making informed care choices and will empower families in a meaningful way.

About Our Courageous Reviewer

Oralea Marquardt, MSW is mom to William, who died at age 8 from GM-1, and siblings Kyla and John.  After William’s death, and inspired by what she learned during his life, Oralea went back to school to get her Master of Social Work. Oralea now works as Youth Grief Counselor at Treasure Coast Hospice in Florida, where she is also a committed advocate for pediatric palliative and hospice care. To learn more about her family’s journey with William, watch her videos at https://www.courageousparentsnetwork.org/video-library/family/oralea-and-rod-marquardt/