After eighteen months of trying to have a child, Sharon and John* rejoiced when they discovered they were finally going to have a baby. The first few months of her pregnancy were filled with excitement and expectation.
*Their real names, used with permission.
Uncertainty at Every Step
At the six month appointment, concerns about the baby’s heartbeat were noted, but the sonogram pictures that were forwarded to a neonatal cardiologist didn’t bring any news – good or bad. Then, the seven month appointment revealed an issue with the wall between the chambers of the baby’s heart. Uncertainty and dread began to creep into their thoughts as they feared the worst.
Bad went to worse one afternoon as Sharon thought her water had broken only to discover amniotic fluid. This was happening too soon. At eight months, Sharon was in labor whether she was ready or not.
A Son Is Born
John Thomas Chatham, III (Trey) was gray in color and not breathing when he was born. He was immediately taken to the Neonatal Intensive Care Unit where he coded and was revived many times. When Sharon and John were finally given the opportunity to visit their newborn son in the NICU, he was hooked to monitors and hidden under a web of wires and tubes. Alive, but fragile.
After Sharon and John visited with Trey, the doctors shared the devastating news that Trey had been diagnosed with CHARGE Syndrome based on his malformed ears, coloboma of his eyes and genital abnormalities. Heart surgery would be needed, as well.
On Trey’s second day of life, his parents were able to hold him. Sharon remembers Trey’s soft touch when she held his precious hand. John remembers Trey holding his hand as if he were holding on for dear life.
A Sliver of Hope Dashed
After nine days at their local hospital, Children’s at Egleston Hospital in Atlanta finally had a bed available for young Trey. This specialized pediatric hospital had the latest technology and the most experienced doctors needed to help Trey. Filled with hope, Sharon and John settled into their son’s new room.
The Dean of Medicine at Egleston reviewed Trey’s medical records, and on day eleven he met with Sharon and John. With sadness in his
eyes, he said, “We have a feeling you haven’t been told everything concerning Trey. According to his records, he was resuscitated for ninety minutes just after his birth, and this length of time might have caused brain damage. We want to start by operating on his heart and see how his organs are functioning.”
Day twelve of Trey’s young life was Sharon and John’s 4th wedding anniversary. On what should have been a day of celebrating their love, Sharon and John met again with Trey’s doctors. His report was more than grim. “Trey has been going through organ failure since the repeated resuscitations just after his birth. Both of you need to talk and make a decision: proceed with the needed surgeries and hope for the best or turn off the machines,” Trey’s doctor said.
Sharon remembered the doctors at their local hospital telling her Trey might have struggles throughout his life, but they never said he might die.
A Heart Wrenching Decision
With possible brain damage and failing organs, there wasn’t much hope. After hours of discussion and pools of tears, Sharon and John made the decision to turn off the machines that were keeping their son alive. Trey was surrounded by the love of his family when he took his last breath. His memorial service was filled with family and friends who loved Sharon, John and Trey.
Sharon took six weeks of maternity leave even though she didn’t bring her son home. During the three weeks John took off to be with her, Sharon and John grieved for the loss of their son and comforted each other. Sharon’s six weeks off was followed by the last three weeks of the school year, a trying time of year for any teacher.
Thankfully, the love her first grade students showed her carried her through until her summer vacation began. What was supposed to be a fun-filled summer of bonding with her son was instead filled with a deafening silence. “Sometimes I got in deep in my grief, but I knew I had to get through it. There was no easy way out,” Sharon remembers.
What to Say and What Not to Say
Sharon and John felt everyone’s love during their grieving process, but found that people often didn’t know what to say or unintentionally said hurtful things. Sharon shared several things to say and not to say to a grieving person, whether his/her loss recently occurred or years after the fact.
What to Say and Do
- I’m here for you.
- I can only imagine how you feel.
- Your story makes me appreciate my kids more.
- Listen to the grieving person and ask questions because it helps the person express his/her feelings and emotions.
- Acknowledge the person who has passed as his/her son, daughter, spouse, etc.
- In conversations, don’t be afraid to mention the person who has passed.
What Not to Say
- It’s in God’s plan.
- You’ll have more children. You’re still young.
- It was meant to be.
- You’ll see him/her when you get to heaven.
- I know how you feel.
- He’s not suffering anymore.
As unfathomable as Sharon and John’s story is, they have a beautiful story of overcoming you won’t want to miss. Check out part 2 of their story next Friday.
Thank you for sharing Sharon and John’s story and thank you for the list of what to say and what not to say. I, like most people, don’t know what to say and am fearful I’ll say the wrong thing.
I’m praying this morning for this dear young couple and look forward to hearing Part 2!
It was Sharon’s idea to share the list. I, too, have not been able to find the words to say to people who are grieving. Sharon’s strength through all of this has been such an inspiration to me.
Thank you for you kind words. I feel that I living Trey’s legacy by spreading the word about CHARGE and helping other families survive the grief of child loss.
this is something i cannot fathom having to decide…wow…i feel like i need a update as to “where are they now?”
Melony, thank you for sharing this story. Jeff and I have been on the same journey as Sharon and John. Our precious Dylan was born with a genetic condition (a deletion on one of his chromosomes) that was incompatible with life outside me. We, too, had to make the heart-wrenching decision to say goodbye when Dylan’s heart began to fail. I, too, have held a first born son as he took his last breath. I, too, have heard the deafening silence of an empty nursery. What resonates with me is the list of what to say and what not to say – Sharon has captured this perfectly. I am so thankful that I was able to see past some of the comments I received to the heart of the person giving them. People feel so helpless in the face of grief, in particular when a child is lost. You asked for people to share the ways they dealt with grief. For me, writing was my outlet. I wrote poems – more than I’ve ever written before or since. They poured out of me as I expressed my feelings of loss as well as the hope of seeing Dylan again in heaven. I also connected with other grieving mothers. Not one for face-to-face discussion groups, I found chatrooms where I was able to give and receive support from people who were facing the same trials as I was. The most important way I dealt with grief came from outside of me – God gave me supernatural peace throughout the entire journey. I drew all my strength from Him. He has worked miracles through Dylan, including my husband’s conversion. People would say, “You’re such a strong person”. To them, I say, I can do all things through Christ who strengthens me” (Phil. 4:13). Over the years, I’ve had (unfortunately) several opportunities to talk with other mothers grieving their babies. My poems have been shared with mothers I don’t even know. I hope that Sharon can feel the small spark of hope that reaching out to other grieving mothers can bring. She, and you, in bringing me her story, have reached out to me even 11 years later. Thank you.
Cindy,
Thank you for sharing your story of loss. I had no idea you had gone through losing your son. If you would be willing, I’d love for you to post a poem or two in the comments section for others to read. Part 2 of Sharon’s story will be posted next Friday. I hope you can connect with Sharon’s ministry then and share your story for others to find encouragement.
Melony
Cindy, I would love to read some of your poems and post them on my blog for you as a guest author. I am always looking for resources other than mine to share perspective. If you don’t want to that is fine but you can email me and I can give you the sites where I publish my writing. treysmommy@angelsteps.net
Heart wrenching, but I look forward to part 2 with hope!
Great story. Sharon has come a long way.