On May 17, 2019, the unthinkable happened to Jeff and Jess Williams.
The Gainesville couple's toddler son Justus died just hours after he was diagnosed with an E. coli infection.
The couple feels certain the Shiga-toxin E. coli that attacked Justus' body was contracted on a visit to Lake Lanier, just 11 days before his death. For more than a year, the Williamses have navigated the deep waters of grief over the loss of their child, while at the same time, trying to get answers from government officials about who should be responsible for alerting lake visitors about the bacteria in the lake.
Now, they are ready for others to know their story.
A day at the lake becomes a parent’s worst nightmare
Justus Teal Williams, according to his mother, was a “sweet surprise.”
"He was not in our plan, but he was in God's plan, and he came along and rocked our whole world in a lot of ways," said Jess Williams.
His father described Justus as a wonderful blend of their two older sons.
“He was very active and wild and crazy just like Jericho, who is our 8-year-old, and he was very smart and loved to read and sit down and organize his toys just like his oldest brother Jonah,” said Jeff Williams.
Justus, they said, was his brothers’ shadow and he followed them everywhere.
On May 6, 2019, Jess and her sister decided to take all three boys to Don Carter State Park to spend a day on the beach, enjoying each other’s company and, of course, swimming in Lake Lanier.
"You know, we were in the water...he had floaties, splashing around, and you know, there was never a point where I was afraid for him. We had been a million times before," Jess said.
In fact, the beach had been closed to swimmers during the same time frame in past years because of contamination, presumably from the feces of Canada geese that flock to the park each May. Jess said there was no signage at the park to alert the public about the possible danger from the birds, something she now believes to be vital information for park visitors.
Jess said since that day at the lake with her boys she has learned that certain strains of E. coli linked to geese and other animals are fatal to children under the age of four and adults over the age of 65.
"If I had known - if I had ever known - that there was such a risk for his age group, we would have never gone," Jess said, noting that other mothers in her friend group – also with toddlers and babies - had no idea about the increased dangers, either.
For about a week after their visit to the lake, Justus showed no immediate signs of illness, but then the diarrhea began. At first, it wasn’t severe. He was still active, and his appetite was still healthy. On May 15, however, that changed. The diarrhea became more prevalent, and then Justus had a nosebleed, something that had never happened before.
Jess took him to the pediatrician, who diagnosed Justus with a virus and sent them home.
“But then, the night came, and his nose started to bleed…and I could not get it to stop,” Jess said.
First thing the morning of May 16, Jess had Justus back in the pediatrician’s office. After some tests, the doctor sent them to Northeast Georgia Medical Center. There, Justus was hooked up to an IV to help stem his dehydration. After analyzing some blood tests, the attending physician from the NGMC pediatric unit told Jess and Jeff they did not have the capacity to treat Justus – he would have to be transported to Children’s Healthcare of Atlanta.
Hours of agony before a diagnosis comes
“We waited almost six hours for an ambulance transport,” Jess said – valuable hours where they still did not know why their little boy was so sick.
Justus was taken immediately to the ICU at CHOA, and Jess began to see changes in his appearance.
“By this point, I noticed that his little feet were starting to get puffy, his face started to get a little bit puffy and all the while, his nose was still bleeding,” Jess said, her voice catching with emotion at the memory.
For the following hours, as doctors and nurses came in and out of the hospital room, Jess and Jeff tried to make Justus comfortable. They gave him sips of water when he said he was thirsty, and he would immediately vomit. He picked at his IVs. He would toss and turn even when his mother crawled into his bed to soothe him.
It was during this time when the Williamses began to hear the medical professionals float the theory of E. coli poisoning. The confirmation came at 3:30 a.m. on May 17.
“I was helping them to collect enough stool samples to get a test to confirm,” said Jeff. “It was 3:30 in the morning when they said it was definitely E. coli. It was the Shiga-toxin virus.”
The diagnosis explained why Justus’ nose would not stop bleeding. The Shiga-toxin virus was impeding his body’s ability to clot blood. Also, his kidneys were failing because of hemolytic uremic syndrome, or HUS, brought on by exposure to E. coli.
Armed with a diagnosis and with a fresh cadre of doctors and nurses who had arrived for an 8 a.m. shift, the Williamses were sent to the waiting room to sit with their family while Justus had a PICC line inserted for medications. The procedure, they were told, would take about 30 minutes.
“In that amount of time, there was a nephrologist that came and explained to us finally after all this time what was going on,” said Jess, telling them about the possibility of dialysis for their boy. “She was hopeful – and we were hopeful.”
Their hopes were quickly dashed, though, when another physician came to the waiting room and told them they had lost Justus’ pulse as they were introducing the PICC line.
They called them back to the room to pray for their child.
“And I dropped down right outside of the room and prayed out loud for any and everybody to hear,” Jess said, weeping. “I could see in the reflection of the glass that they were doing chest compressions and something in me just told me to stay where I was because I didn’t want to see him in such distress.”
Jess said she was holding Jeff’s hand as he watched the doctors and nurses work and she heard someone say that Justus’ pulse had flickered for a tiny moment.
“But, in my spirit, in my body, I felt and knew that he had already gone on,” Jess said, even as they continued working on Justus for another hour.
Justus’ time of death was officially recorded at 1:14 p.m., Friday, May 17, 2019.
Finding purpose in Justus' death
The hours and days after Justus died were a blur. Jeff and Jess had to tell their older sons that their baby brother had died. They had to decide where they would send Justus’ body and what kind of funeral he would have. They answered questions from family and friends. As Jess said, they had to handle the business of their boy’s death.
During those early days as they journeyed through the initial phases of grief, the couple also began to hear more about the dangerous bacteria that lurks along many parts of Lake Lanier’s shoreline. Just two weeks after Justus died, the beach area at River Forks Park and Campground, located downstream from Don Carter State Park, was closed when routine water tests indicated dangerous levels of E. coli in the water.
Armed with that information, a family friend made an Open Records Request to get the beach water test results from Don Carter Park for April and May of 2019.
The documents showed on May 6, the day Jess and her boys visited the park, the E. coli level was recorded at 1,010 CFU/ML (colony forming units per 100 milliliters of water); the recommended level for safe swimming is less than 235 CFU/ML. However, government officials taking the measurement deemed the spike to be an “outlier.” In other words, the numbers were such an aberration, they were not thought to be accurate.
With those red flags, the couple retained legal counsel to determine if there was negligence at any government level.
A year later, the communication through legal counsel continues, and while the Williamses said there are specifics they cannot discuss, they felt that it was time to make a public statement about some policies and procedures they would like to see change.
“[Our legal counsel has filed a Form 95] with the Army Corps of Engineers, asking them to address how testing is done, the turnaround time from when they get the results to what they do when they get the results to how it’s [the information] is passed down to local authorities,” Jeff said.
With accurate data – made more readily available to the public – parents, grandparents, doctors and others will have information about E. coli “on their radar,” as the couple puts it.
"I have learned so much about E. coli in the hardest way possible, and it’s something that parents should know," said Jeff. “If there’s an open area to swim, I understand there’s no lifeguard, but there needs to be some kind of knowledge of the [other] dangers of swimming in the lake.”
In their minds, increasing awareness should not be difficult.
“You know, if you go to the beach, there’s a flag system for the rip current,” said Jeff, noting that he would like to see something similar on Lake Lanier. “Whether it be a billboard or whatever, when you pull into a park, you see a sign that says, ‘E. coli levels are high.’”
And then, of course, there should be the additional warning for high-risk groups – the very young and those over age 65 – to stay out of the water altogether.
Spread Joy for Justus
Beyond pushing for changes in government accountability, Jeff and Jess and the rest of their family are still learning how to live life without Justus.
Jess studied psychology in college, and she said she thought she was well-versed in the stages of grief.
“The stages of grief in my own mind were linear. You went through them and that was it, but that’s not the case,” said Jess. “Grief is absolutely not linear, and you can go through the stages a hundred times a day.”
One way the family has tackled their grief is by doing kind deeds for others. On October 17, 2019, the day that would have been Justus’ third birthday, they suggested their friends and loved ones remember their little boy with acts of kindness across the community.
"We wanted to do something with joy and not meet that day with sorrow," said Jess.
Justus was learning his colors and yellow was his favorite, so everyone was encouraged to wear yellow. He also loved dinosaurs and he also loved going to the park and playing on the swings. Since he was exactly 31 months old on his “Heaven Day,” as the family calls it, they bought 31 dinosaur figurines and tied cards to each one, leaving them at different parks for children to find and take home.
“There were things done all over town in his memory,” Jess said.
They plan to do the same thing on October 17, 2020 – and on October 17 for years to come.
While Jeff and Jess received several books about grief from friends who were trying to help them cope with their loss, one special book provided the healing they did not find in others.
“Through the Eyes of a Lion” was written by Levi Lusko, a pastor who lost his young daughter suddenly to an asthma attack. The book was a gift from fellow parents of child loss. The book has taught them to look at the passage of time through a different lens.
“I would sit on my porch swing and just cry and say, ‘it’s been 18 days, it’s been 30 days’…since we didn’t have him,” Jess said. The book taught them to “flip” their concept of time.
“What we now say is ‘we are not a certain number of days removed from Justus – instead, we are that many days closer to him’,” she said.
Ultimately, Jess and Jeff Williams want their family’s tragedy to help other parents. That help will come in the form of knowledge, and they said they will keep pushing for policy changes.
“For me, I lean on our belief and our faith,” said Jeff. “God’s going to use our little 2-year-old to hopefully grow His kingdom to save someone else.”
Editor’s Note: A petition has been posted at Change.org asking that federal, state and local government officials enact more transparent safety protocols for Lake Lanier. Follow this link to read more.
