When their infant son was diagnosed with a rare form of epilepsy, Joel and Tiffany Smith found themselves at the beginning of a difficult and painful journey. However, through their faith in a sovereign God and a selfless love for each other, burden has been transformed into blessing and tragedy into triumph.
After Joel and Tiffany Smith learned their first child was to be a boy, Joel envisioned soon having his own little hunting and fishing buddy, and when Hayden arrived weighing over eight pounds and stretching 21 inches long on Feb. 20, 2004, there seemed no reason to doubt his wish would come true.
“The pregnancy, the birth—everything—was just typical. He was developing normally,” Tiffany said. Less than 24 hours after Hayden’s four-month vaccinations, something had changed. “His arms would kind of jerk out, usually when he was eating.”
Hayden’s pediatrician, Dr. Lisa Miller, twice sent the family to Egleston Children’s Hospital where, each time, the diagnosis of Moro reflex—a normal, healthy startle reflex in infants—was made. When the spasms became more frequent, Miller sent them back to the hospital armed with a strong message. “We told them we weren’t leaving until they did an EEG,” Tiffany said. The brain scan revealed a new diagnosis. “They saw what was the typical pattern of Infantile Spasms.” Infantile Spasms, a rare form of epilepsy in babies, can often lead to other types of seizures, as well as severe developmental problems. “I remember coming home and researching it on the computer, and everything was horrific,” Tiffany said. “There were no good outcomes.”
Doctors immediately prescribed an eight-week-long regimen of daily steroid injections. By the third week, Hayden’s blood pressure had skyrocketed, leaving him with possible kidney damage and on the verge of a stroke. The steroids were abruptly stopped, causing a dangerous drop in blood pressure. It was 10 days before Hayden was stable enough to be released from the hospital. It took six months of BP medications and Lasix to get his blood pressure regulated. “The spasms had, by then, all but stopped,” Joel said. When another five months went by with no seizures, the Smiths were hopeful they were gone for good. They were not. “We were at a family Christmas gathering at my mother’s house when we saw the first one,” Tiffany said tearfully. “That was super hard.” Doctors advised the Smiths to expect Hayden’s IS to follow the normal pattern of transitioning, at some point, to another type of seizure disorder. “They just didn’t know what,” Joel said, “so we waited and went to the neurologist every six months.”
“This is the life that God has given us. What do you do but live it?”Joel Smith
The next three years represented a time of adjustment, as well as growth, with Joel and Tiffany welcoming their second son, Luke, to the family. Although accepting Hayden’s diagnosis had been difficult in the beginning, they were grateful he was doing as well as he was. “Doctors had said there’s an 85 to 90% chance he’ll never crawl, walk or talk. Well, here we are at 4 years old, [and] he’s walking, he’s playing, he’s talking—not like a normal 4-year-old, but he’s doing those things,” Joel said. “We just felt so blessed,” Tiffany added.
Then, suddenly, the drop seizures started. Drop seizures, also called atonic seizures, cause a sudden and acute loss of muscle strength. “They were the most horrific thing I had ever seen,” Tiffany said. Joel explained: “He could be laughing, playing, and it’s like someone just kicked him in the back, and with all his force, he would just faceplant.” Hayden suffered scrapes and bruises, busted lips and even concussions from the falls. “That’s when he started wearing a helmet,” Tiffany said.
Around the same time, Hayden’s neurologist ordered another EEG to see if a new drug they were trying had produced any changes. There was a change but not the one for which the Smiths were hoping. A phone call from the neurologist confirmed what Tiffany already suspected from personal research. Hayden’s IS had progressed to Lennox-Gastaut Syndrome. “Infantile Spasms was horrific,” she said. “Lennox-Gastaut Syndrome was even more.” LGS is a severe form of medication-resistant epilepsy characterized by multiple seizure types and delayed or worsening cognitive development. Behavioral problems, including autism, are also common with the disorder.
Tiffany vividly remembers Joel’s reaction when she broke the news of the LGS diagnosis to him. “He was at peace with it,” she said. “I think the first thing that he said was, ‘He’s perfect. He’s just what God wants him to be.’” Looking back to that defining moment, Joel explained how he could make such a statement of faith in the face of seeming tragedy. “At that point, it’s the hand that we’ve been dealt,” he said. “This is the life that God has given us. What do you do but live it?”
Still, the prognosis for Hayden was not encouraging. “Everything Tiffany had read [about LGS] was just talking about a regression almost to a vegetative state,” Joel said, “so we’re thinking that’s the road we’re about to go down.” Hayden’s drop seizures were relentless. “On a good day, he would have eight or 10; on a bad day, he might have 30 to 40,” Joel said. For his protection, Hayden had to be strapped in a wheelchair, helmet on, “almost non-stop.” When two months of trying yet another drug yielded no results, Hayden’s neurologist suggested he be evaluated for brain surgery. A corpus callosotomy would interrupt the seizure path in the brain and, hopefully, reduce the number of seizures. However, there were serious risks. “We’re deciding whether to go through with the surgery and try to give him a better quality of life but with the possibility of him being paralyzed [and] never speaking again,” Joel said, choking back tears. “After a lot of prayer, we decided, ‘Yeah, we’re going to do this.’”
What the Smiths believe to be a case of divine intervention came in the form of a shingles patch the size of a nickel. The otherwise innocuous spot had appeared on the neck of Tiffany’s mother about a week earlier, after she had spent the previous day with Hayden. On the morning of the scheduled operation, the Smiths were on their way to the hospital when a pre-op question concerning exposure to shingles stopped the them in their tracks. “The hospital called and said, ‘Turn around. We can’t do the surgery,’” Joel said. “We were actually devastated because we had prepared ourselves for this.” The surgery, re-scheduled for three weeks later, would never happen. “Literally the day Hayden was supposed to have the surgery, he had zero drop seizures—the next day, like one or two. Over the next several days, they dwindled to nothing, and that was it,” Joel said. “We know that was God’s hand.”
In the coming years, Hayden would go on to attend special needs classes in public school, starting at age 5 and ending at age 13, when seizures became too intense and frequent. True to form, the seizures have often transitioned from one type to another. Nowadays, Hayden experiences tonic-clonic, or grand mal, seizures—a type characterized by a brief loss of consciousness and convulsions. Four different medications help to limit their frequency, and family members stand by to help prevent injuries from falls when they do occur. “He’s always within arm’s reach if he’s not sitting down,” Joel said.
No cause has ever been found for the initial onset of Hayden’s spasms, although the Smiths strongly suspect his four-month vaccinations triggered them. Still, they are “not anti-vaxxers,” believing Hayden’s case to be an exception. “I’m vaccinated,” Joel said. “Tiffany is. Luke is.”
Although Hayden has regressed in many ways since the onset of LGS—he can no longer count or recognize colors or letters, and he is extremely limited verbally—the Smiths focus on the positives. “Doctors are amazed at where Hayden is today, 19 years old and still walking [and] playing,” Joel said. “He can feed himself,” Luke added. “He can throw a fishing line with the best of them,” Joel said. “He loves the beach, kicking the sand and making everyone laugh,” Tiffany said before describing her firstborn as “happy and affectionate.”
One of Hayden’s favorite activities involves getting in the car and meeting his dad for lunch. Almost every day, Tiffany packs a picnic basket before she and Hayden pick up Joel at work. The three of them then find a restful place to park, and the fun begins. Joel describes the scene: “He’s in the backseat behind us, and I turn around and say, ‘Hayden, you ready for lunch?’ He sits up and gets big—and it’s just a picnic basket that we’ve had for 20 years—and I lift it open, and he looks in there like it’s Christmas… every… single… day, like it’s the best thing ever. It’s hilarious.”
Then there are the many nights, after a “hard” seizure, when Hayden does not sleep at all. Positioned side by side by side on the recliner/loveseat, Joel and Tiffany take turns catnapping while Hayden alternates between his bowling video game and watching the Outdoor Channel and PBS cartoons. Somehow, the Smiths always seem to meet the challenges of the next day, whatever they may be. “Our faith is all that gets us through,” Tiffany said. It has been so since the beginning, when God provided a praying pastor and a caring church, and it has continued to this day through supportive family and friends.
“There are difficult days, but it’s not a burden,” Joel said. “It sounds strange to say, but it’s been a blessing. I firmly believe it’s made Luke a very gentle and kind person.” Joel and Tiffany wondered aloud that young Luke, now 17, has taken on so much in caring for his older brother. A senior at Social Circle High School, he downplayed any sacrifice on his part: “I wouldn’t trade it for anything.”
Now nearly two decades into their journey with Hayden, the Smiths continue to cling to their faith. “Just to know God’s always in control, it’s just His plan. When you can realize that and accept it, it makes life so much easier,” Joel said. Tiffany agreed. “There’s a saying [that] ‘You can’t always choose the path you’re given, but you can choose how you walk it,’” she said, “and I think there’s a lot of truth to that.”