When Angie and Cecil Bellephant were told that their son, Titus, had Potter’s Syndrome, they frantically searched local libraries and the Internet for further information. Little was found. Angie vowed while she carried Titus that one day she would write a book for others who face this devastating condition.

“I told Cecil, no matter what happens, we have to do something to bring awareness to people,” Angie said. “I didn’t want people to feel alone like I felt alone.”

Potter’s Syndrome is also known as Bilateral Renal Agenesis (the absence of kidneys). Their son Titus also had Branchio-oto-renal (BOR), a dominant genetic condition that can result in kidney anomalies.

Today the incidence of Potter’s Syndrome is said to be somewhere between 1 in 2,000 and 1 in 5,000. The average occurrence rate is approximately 1 in 4,000 births.

“Giant Hero” is a book that parents can hold quietly and read slowly. It also serves as a tool to teach what Potter’s Syndrome and Branchio-oto-renal are and how to obtain further information.

A contributing writer to this text is Jason Clarke, University of Iowa, Department of Pediatrics, Bilateral Renal Agenesis researcher.

Angie has turned her “mourning into glory” since Titus died. At 3 ½ pounds, Titus brought many life lessons to medical workers, family members and friends.

Despite the suggestion from medical workers, some friends and family to abort Titus, Angie and Cecil chose to carry their son. Titus lived 15 hours and 7 minutes. Even his pediatrician was amazed at his strength and determination to live.

“Titus wasn’t perfect by medical team standards, but he was perfect to us,” Angie said.

“Cecil and I knew that our only option was to carry Titus as far as we could,” Angie said. “Doctors could not tell me Titus was suffering. I would never let any of my children suffer. Titus was alive. Very much alive.”

Through this manuscript, Angie and Cecil intimately walk parents through the diagnosis, birth and years following the loss of Potter’s child. Giant Hero will help family members, nurses and doctors see that the decision to continue carrying a baby is ultimately up to the parents.

Cecil Bellephant also shares personal thoughts on his wife’s strength while carrying a child that was destined to die, and how he continues to mourn the loss of his son today.

“Even though it was hard to let him go, I thanked God that He gave him (Titus) to us in that short amount of time so we could give him back. I thank God for that,” Cecil said.

“…something in (his) look will forever give me strength to go on day to day,” Cecil said about Titus. “I remember those eyes. It wasn’t a smile, or a frown. God says that strength is made perfect in our weaknesses. There was strength there in Titus’ eyes.”

Angie has since reached out to other parents who have lost a child and spoke to nursing students about infant loss.

As she shared her story with others, Angie learned she had a gift of public speaking.

“I felt like I was touching people and that if I could do more, God would guide me to do it,” Angie said.

Thus, her book, “Giant Hero,” was born.

Family members and friends told Angie and Cecil that they should not try to have more children. Once you have a Potter’s baby, the risk of carrying a fetus with some kind of kidney defect is about three percent. But the Bellephants put their faith in God and continued to try having more children. They already had a son, Cyrus, who was 3 when Titus was born. As time went on, God blessed Angie and Cecil with two healthy daughters, Genesus and Joyus.

We pray that this book brings comfort and hope to everyone touched by Potter’s Syndrome, including parents, siblings, family members and friends. We hope it educates health care professionals on what it may be like for moms, dads and family members who face this devastating diagnosis. And, we hope it provides a doorway to obtain more information about this devastating condition.