From the Pregnancy Loss and Infant Death Alliance, PLIDA, newsletter, March 2009.

Ahrens, T. with A. Bellephant & C. Bellephant. "Giant Hero: One couple’s journey through loving and letting go of a son with Potter’s Syndrome." West Conshohocken, Penn: Infinity Publishing, 2008.

This richly woven book was authored by a journalist who got to know the Bellephant family during their pregnancy with baby Titus, who was diagnosed in utero with the fatal condition Potter’s Syndrome (bilateral renal agenesis.) Filled with quotes and interviews from the parents Angie and Cecil, this book reflects their complicated journey of pregnancy and beyond: deciding to continue rather than terminate; the dread and joy that makes up the emotional rollercoaster of this kind of pregnancy and birth; decisions around NICU care when a baby is born early but in surprisingly good condition; the ultimate acceptance of the fatal diagnosis; the decision to let a beloved baby go and holding him until he dies; and the grief that follows death.

Parents who are enduring or have endured a similar rollercoaster will find comfort in Angie and Cecil’s story, which explores the common ground of bereavement and holds insights into the emotional complexities and agonizing decisions of parenting a baby who will die. They speak honestly about their positive and negative experiences with health care professionals, their efforts to be assertive and the benefits they reaped from compassionate, collaborative care. Practitioners can reap constructive guidance from this feedback.

Angie and Cecil also talk about their faith, offering a window into their belief in miracles and coming to realize that “Faith is good, but faith is not the greatest thing, love is.” Cecil as a father, husband, and African-American man speaks eloquently about his own spiritual and emotional growth, and he offers hard won insights about grief and marriage for other dads. Angie speaks incisively about a mother’s special grief.

Even though the family set out to write a book for families whose babies are diagnosed with Potter’s Syndrome, their story can speak to any parent whose baby has a fatal condition. Also, it can resonate for fathers and mothers alike, and is appropriate for families from any spiritual tradition or cultural background. The final chapters include detailed medical information and resources on Potter’s Syndrome, heartfelt materials from Titus’s wake and funeral, and a list of tips from The Compassionate Friends about offering support to parents after their baby dies.

This book was funded by the University of Iowa Potter’s Syndrome Research Group. The Bellephants have a website: www.gianthero.net.

Giant Hero - Book review Written by Corinne O'Flynn, Rowan Tree Foundation

Told by Angie and Cecil Bellephant, Written by Tracy Ahrens

One couple's journey through loving and letting go of a son with Potter's Syndrome.

Giant Hero is a wonderful book that tells the bittersweet story of the pregnancy and short life of Titus Bellephant, diagnosed in utero with Potter's Syndrome (bilateral renal agenesis).

Through the telling of this story, written by a journalist and friend of the family, we get a glimpse of the Bellephants, the trial they endure through the pregnancy and birth of their son, how faith played a role in their journey, and how they faced their grief after Titus was gone.

I especially liked Chapter 15, where the author asks specific questions and the answers are shared in an interview style. It made the family so real, so typical. I believe that tragedy is viewed by many people as something that happens outside of their own circle. And I also know that when tragedy strikes, it brings with it an isolation like nothing else.

This book is a terrific resource for anyone facing a diagnosis of Potter's Syndrome in their child, or for those who will support them. This book was inspired by the parents' desire to create a substantive resource for future families whose baby receives this diagnosis. The result is a beautiful tribute to their son, a portrait of an everyday family dealing with something that happens "to someone else", and a fact-based explanation of Potter's Syndrome, what it means, and where to find support.

This richly woven book was authored by a journalist who got to know the Bellephant family during their pregnancy with baby Titus, who was diagnosed in utero with the fatal condition Potter’s Syndrome (bilateral renal agenesis.) Filled with quotes and interviews from the parents Angie and Cecil, this book reflects their complicated journey of pregnancy and beyond: deciding to continue rather than terminate; the dread and joy that makes up the emotional rollercoaster of this kind of pregnancy and birth; decisions around NICU care when a baby is born early but in surprisingly good condition; the ultimate acceptance of the fatal diagnosis; the decision to let a beloved baby go and holding him until he dies; and the grief that follows death.

Parents who are enduring or have endured a similar rollercoaster will find comfort in Angie and Cecil’s story, which explores the common ground of bereavement and holds insights into the emotional complexit ies and agonizing decisions of parenting a baby who will die. They speak honestly about their positive and negative experiences with health care professionals, their efforts to be assertive and the benefits they reaped from compassionate, collaborative care. Practitioners can reap constructive guidance from this feedback.

Angie and Cecil also talk about their faith, offering a window into their belief in miracles and coming to realize that “Faith is good, but faith is not the greatest thing, love is.” Cecil as a father, husband, and African-American man speaks eloquently about his own spiritual and emotional growth, and he offers hard won insights about grief and marriage for other dads. Angie speaks incisively about a mother’s special grief.

Even though the family set out to write a book for families whose babies are diagnosed with Potter’s Syndrome, their story can speak to any parent whose baby has a fatal condition. Also, it can resonate for fathers and mothers alike, and is appropriate for families from any spiritual tradition or cultural background. The final chapters include detailed medical information and resources on Potter’s Syndrome, heartfelt materials from Titus’s wake and funeral, and a list of tips from The Compassionate Friends about offering support to parents after their baby dies.

This book could have used judicious editing as it is repetitive, but it is easy to read and so full of information and emotional insights on such a wide range of topics, that it can be of great value to grieving parents.

Ahrens, T. with A. Bellephant & C. Bellephant. Giant Hero: One couple’s journey through loving and letting go of a son with Potter’s Syndrome. West Conshohocken, Penn: Infinity Publishing, 2008. (126 pages.) Funded by the University of Iowa Potter’s Syndrome Research Group. The Bellephants have a website: www.gianthero.net Reviewed for PLIDA and Share by Deborah L. Davis, PhD, author of Empty Cradle, Broken Heart (Fulcrum) :: Loving and Letting Go (Centering) :: A Gift of Time (Johns Hopkins University Press, in 2010).

See the link for this newsletter at www.nationalshare.org/Sept_-_Oct_09.pdf