By Lou Phelps
Out of tragedy and sadness can come purpose and strength, and that has been the experience of Clay and Kayla Johnson of Pooler.
The Johnsons have two children, Ryah and Silas, who are full of personality.
But along the way, as they built a family, they also faced loss – the loss of a child immediately after its birth, as well as miscarriages. And as they looked around at the local support services and resources for families who had experienced the same type of loss of a newborn or a very young child, such as through Sudden Infant Death Syndrome (SIDS), they felt the need to create something else new: a foundation to support parents who have had similar experiences.
From this recognition, the Zoe Foundation of Georgia was born. The Johnsons have launched a Web site (www.zoefoundationcharity.org) to connect parents and provide a local support mechanism to help families honor and remember these children.
The Zoe Foundation Charity will hold a public memorial walk on Friday, Oct. 16, called “The Zoe Foundation Walk to Remember,” in Forsyth Park in Savannah’s Historic District. October was chosen because it is National Infant and Pregnancy Loss Awareness Month.
ZOE’S STORY
Their story is very touching. Here are Clay's words, explaining the experiences that led to the creation of the local foundation:
“Ryah, our first child, was the perfect daughter. She was born a beautiful and healthy baby girl, and as she developed she made us proud with each early milestone (indicating an advanced intelligence level, of course). Plus, she was well-behaved, for the most part.
“So when Kayla got pregnant again it was only natural for us to assume that we would enjoy the same blissful parenthood experiences all over again. In March of 2004, however, during what in the previous pregnancy had been the much-anticipated ultrasound that revealed the baby’s sex, our perfect world crumbled.
“The ultrasound technician became very quiet as she examined the grainy images of our baby on the screen. Her eyes shifted away from us, and she excused herself from the room leaving us feeling horribly uncomfortable. When the door opened again a few minutes later, in walked Kayla’s obstetrician with a very somber expression. Her soft words to us were confusing and uncertain. Our baby was underdeveloped with some deformities on the face, specifically a cleft palate, but more tests were needed. She would arrange for us to see a specialist. That was it. Nothing has been the same since that moment.
“After a few days of uncertainty, sharing our fears with family and friends, and hearing them assure us that everything would be OK, we visited the neonatal unit for more examinations of our baby. I walked in with the confidence everyone had given us that everything would work out fine because doctors can work wonders with all of the advanced medical technology today.
“However, a more intense ultrasound and an amniocentesis revealed the truth: no medical technology could help our baby. Our child had a serious chromosomal disorder — probably fatal.
“It was only after all of this devastating news that it dawned on us to ask the gender of our precious baby. The doctor told us we were having a girl, another beautiful, perfect little girl who was soon to be diagnosed with Trisomy 13, or Patau’s Syndrome, a fatal condition.
“Before receiving the official results from the amniocentesis, Kayla and I spent the next few days researching all of the trisomy disorders. We learned volumes of very hard facts very quickly, and we learned that our girl had all of the severe anomalies of Trisomy 13: a cleft palate; underdeveloped lungs, liver and other abdominal organs; heart issues; and the lack of separation between the hemispheres of the brain. As difficult as it was to hear, the phone call only confirmed what we already suspected. Then we knew that if our daughter were to be born alive, she would not live very long. But that did not stop us from praying for a miracle.
“The spring and summer of 2004 were excruciating, but not because of the south Louisiana heat and humidity; we didn’t even notice that. Our grief and anxiety sapped our strength as if we were wandering aimlessly in the desert, searching for any glimmer of hope, deliverance or rest, yet finding none.
“In addition to the strain of knowing our baby girl would come into this world completely overtaken by suffering, I was confronted with the financial challenges that lay before us. Supposing our child might survive for days or weeks or months (there were a few documented cases of more prolonged life with Trisomy 13), and knowing that the costs could skyrocket, I went back to the school I had previously resigned from and begged to be rehired as an English teacher. I was grateful when the school took me back in because we needed the insurance.
“As the baby grew within Kayla, we pondered names. Ultimately we decided to name our daughter Zoe Evangeline Johnson. Zoe is an ancient Greek word meaning ‘life.’ And Evangeline is a derivative of ‘evangelist,’ with the root word ‘angel,’ all meaning ‘a bearer of good news.’ We knew when her name came to us that our daughter would be a life that brought good news to us.
“Kayla began to have complications with the pregnancy and her body began to suffer with endometriosis, which led to the possibility of severe toxemia. After running several tests the doctors decided to deliver Zoe by C-section. On July 1, 2004, Zoe Evangeline Johnson was born. Her heart beat for about 90 minutes, then she went to sleep, passing on to be with our Lord. Several months afterward, Kayla got pregnant again, but her pregnancy ended in miscarriage.
“All of the difficulties we faced – the real fears, the imagined horrors, the unforeseen challenges – led us to seek to help others who are enduring or have endured similar losses.
DELIVERING A DREAM
“Kayla had a dream to begin a foundation to assist grieving parents in their needs. Thankfully, we had strong physical families and devoted church families who helped to carry our burden. Somehow, all of the bills were paid, the burial plot was provided, and the funeral was arranged all without our having to worry about it. But countless others go through such valleys alone and without strong support systems to hold them up.
“Kayla so desired this dream to become reality that she devoted her master’s thesis to study the communication between grieving mothers and their surviving children in the midst of the sickness and death of a child. Very few studies exist that touch on this, and no known study is wholly devoted to it, placing Kayla’s thesis in the realm of ground-breaking research. As a result, she has not only earned her M.A. in speech communication from the University of Arkansas, but she also has received many educational accolades in the process.
“Now, we are in the midst of making Kayla’s dream a reality. The Zoe Foundation will soon be operational in Georgia, providing financial and emotional aid to grieving mothers and fathers who are mourning the loss of a baby. Our dreams are big, and we plan on seeing them become reality.
“In the meantime, however, we are proud to participate in America’s observance of October as Infant and Pregnancy Loss Awareness Month. Several years ago, our government made October the official month of observance. Visit www.october15.com for all of the specific details on the proclamation. Many cities have various events to honor grieving parents, but Savannah has not participated — until now.”
WALK TO REMEMBER LITTLE ONES LOST
For The Zoe Foundation Walk to Remember on Oct. 16, registration can be made in advance or at the event. There will be on-site registration from 5-6 p.m., with the walk from 6-7:30 p.m.
To pre-register for the event, families are asked to e-mail Kayla Johnson at
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
or call 912-508-1858. When registering, parents are asked to include their name, phone number or e-mail, and the name of their baby to be honored. T-shirts and candles will be available for purchase at the event.
There will be guest speakers, special music, luminary bags and the mile walk around Forsyth Park. This free event is open to the public, and all families are encouraged to come and participate.
A Sonnet for Zoe
By Clay Johnson, Zoe’s Daddy
On angels’ wings I fly my prayer for you
That God may grant your feeble body stay,
Or birth may come and give you life anew,
Or time rush by to wash our grief away.
Such sorrow longs for days that long are passed
And hides its face from days that are to come
Or pleads to see the end of days, at last
When with our Lord I see you in that Home.
For one brief hour we saw you on the earth.
For one brief hour we held you in our hands.
Flesh failed to hold your soul’s eternal worth,
And blessed you are to flee the shadow lands.
While through tears our spirits shall sing of Grace,
Evangeline beholds our Savior’s Face.
Lou Phelps is publisher of Coastal Family Magazine
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