Tiffany Smith talks like a seasoned health care professional. This local mother of two young boys can spout off the complicated, often times impossibly long, names of disorders, procedures and medications that would leave most people tongue tied. Tiffany came by her knowledge the hard way. Not through years of formal education, but rather seven years of loving, nurturing and understanding her first born son's medical condition.
Back in 2004, Tiffany and Joel Smith were happy, new parents. No family history or injury gave them any indication that something could be wrong with their infant son. Tiffany first noticed Hayden's eyes fluttering as she nursed him when he was just 4 months old. She says his arms went straight out, something her family would come to know as "jack knifing," a tell tale sign of a seizure in progress.
After a couple of trips to Egleston (Children's Healthcare of Atlanta's site in Decatur), Hayden went undiagnosed. Tiffany credits her son's pediatrician, Dr. Lisa Miller, with making sure Hayden was properly diagnosed. "I have to give credit to Dr. Lisa. She was real aggressive in trying to find out what was wrong with Hayden."
On the fourth trip to the local emergency room, an EEG was performed and a staff neurologist gave Tiffany and her husband, Joel, the diagnosis of Infantile Spasms. Joel said, "You hear the word ‘infantile' and you think OK, maybe he'll grow out of it. And ‘spasms,' how bad can that be?"
Tiffany added, "Then, we got home and went online and started reading the outcomes. There's only a 10 percent chance our son will walk or talk. That's when our whole world came crashing down."
Infantile Spasms (IS) is known as one of the "catastrophic childhood epilepsies," because of the difficulty in controlling seizures and the association with mental retardation. IS begins between 3 and 12 months of age and usually stops by the age of 2 to 4 years. The disorder is uncommon, affecting only one baby out of a few thousand. About 60 percent of the affected infants have some brain disorder or brain injury before the seizures begin, but the others have had no apparent injury and, like Hayden, have been developing normally. Although IS has been known to the medical field for 165 years, little is known about what causes it. There is no evidence that family history, the baby's gender or factors such as immunizations are related to infantile spasms.
Joel and Tiffany, after practicing on an orange at the hospital, administered daily doses of steroids to their infant son for the next 3 weeks with the understanding that it might or might not help. Hayden screamed non-stop for those three weeks until it was discovered that the medication was causing high blood pressure. Another 10 days in the hospital was necessary to bring down his blood pressure and regulate his heart rate. The family had to go to Newton County Medical Center everyday for the next 4 months to have Hayden's blood pressure checked. "We had to bring our own cuff with us," remembers Tiffany. "They didn't have one small enough for his arm."
With his spasms moderately under control with between four or five seizures a day, and his blood pressure regulated, Hayden began reaching some of the milestones the young parents had read about in parenting books. Hayden sat up at nine months and crawled at a year old. His father, Joel, pointed to a spot out on his in-laws' driveway and said, "Hayden walked for the first time right over there when he was 17 months old. It just hadn't set in where we were really going with this disorder." Hayden started physical and occupational therapy to work on fine motor skills and helping him learn to swallow.
At age 4, another EEG gave some indication where the disorder was headed. Hayden was diagnosed with Lennox Gastaut Syndrome. About one fifth of children with IS, develop this form of epilepsy. Lennox Gastaut is a type of epilepsy with multiple different types of seizures, particularly tonic (stiffening) and atonic (drop) types of seizures. Intellectual development is usually, but not always, impaired. Only 2 percent to 5 percent of all childhood cases of epilepsy are categorized as Lennox Gastaut Syndrome.
Joel said once they got the tonic seizures under control, the atonic seizures began. Atonic seizures meant Hayden was prone to serious injuries like concussions, because he would drop, often head first, with no warning. He wore a helmet with the face guard, favoring a dirt bike helmet over the specialized seizure variety. Hayden was experiencing between 30 to 40 seizures a day during this period.
"Thankfully, we had moved next door to my parents," Tiffany said. Joel added, "We always had our hands on him. You never knew when he would just drop."
Hayden started the drug, Clobazam, a medication not approved in the United States, for the treatment of the atonic seizures. The Smiths still have to purchase Clobazam from Canada. He's been on the drug for nearly three years and is no longer suffering from daily atonic seizures. Now, on a good day, Hayden only has one or two seizures. Bad days mean five or six.
Hayden is enrolled in a special needs class at Flint Hill Elementary School where he has learned his alphabet. Every achievement and milestone is a miracle to both his family and his doctors. Hayden mostly enjoys working outdoors and either playing with one of the family's three dogs or playing baseball. "I don't know what we're going to do this winter," said Tiffany with a smile.
Hayden's eyes light up and he screamed, "Papa!" as his grandfather came home from work. Hayden's 5 year old brother ran close behind, both of them eager for a game of ball. The boys' grandparents, Roy and Janet Frix, live right next door to the Smiths and provide help and support in caring for Hayden. Joel's parents, Lanier and Connie Smith, live in Mansfield and help as well. Despite the demands of providing constant care for Hayden, the Smiths have never had in-home healthcare.
Hayden is becoming more independent as he grows older, but he is prone to wandering away in a split second and is unaware of danger. Hayden won't answer when you call for him, so he must be in sight at all times. The idea of a trained canine for Hayden was suggested by a nurse, but the waiting lists for children can be long and the price tag is considerable. The family contacted Georgia K9 in Canton and, after interviewing, found that Hayden was a candidate for a trained canine.
A trained canine would mean that Hayden could experience his surroundings without the constant, hands on companionship of his family. The canine would help with balance, coordination and could be tethered to Hayden at all times. Tethering would help deter Hayden from dangers like walking outside on his own or into the woods. Hayden's canine will be trained specifically for him through a rigorous process which will begin as soon as the dog can leave its mother. The canine Hayden will get will be born sometime in October.
The trained canine costs $18,000, a price tag too high for the family to cover on their own. Their church, Macedonia Baptist in Oxford is sponsoring a golf tournament on Oct. 24 at Highland Golf Club in Conyers to help cover part of the cost. For more information, contact Frank Daws at (770) 787-2648. Donations can also be made to the Benefit Fund for Hayden Smith at United Bank located at 7200 Highway 278, Covington.
Tiffany Smith said she's thankful God made Hayden just the way he is. "The divorce rate for those with a child diagnosed with Lennox Gastaut syndrome is up to 75 percent higher than the average divorce rate.
"This tells you how stressful life can be. I must say though that this experience has strengthened our marriage. God has richly blessed Hayden and our home. Yes, things are harder since he's gotten older, but we were given this life for a reason and we are truly changed because of it."