Chicago boy's death from epilepsy turns parents into activists
Tuesday, March 23, 2010
If they had only known.
That thought lingers through the busy mornings getting the kids out the door to the quiet nights and all the hours in between for Mike and Mariann Stanton, who are doing their best to survive the unthinkable.
The death of a child.
If they had only known, Mike says, to ask doctors about the worst possible outcome for 4-year-old Danny, who had the first of four known nighttime seizures when he was just 2. If only they had known about seizure alarm devices. If they had only known about sudden unexplained death in epilepsy.
"If we had known that deaths could occur, we would have operated a lot differently. The things we are doing now, we would have done then," Mike says.
But they did not know.
Until it was too late.
Now the Stantons want to make sure other parents have the information in time to save the next child.
A life full of children
Mike, a Chicago Northsider, and Mariann, a Chicago Southsider, created a home together filled with love, laughter and the boundless energy of children.
Each unique in their own way. But it was Danny who possessed what his dad calls a "specialness about him." Intelligent, affectionate, athletic, compassionate, with big bright eyes that mirrored his mom's, Danny liked to hug, especially those who needed his hugs the most.
"He truly did enjoy his life. He really did. Every day. With such gusto, he did. Just a robust kid, he took it all in and he gave it all out, too," Mike says. "Danny really was special in that way."
Life took a terrible turn on Sept. 20, 2007. With Danny snuggled sleeping between his parents, his body clenched and shook, his eyes rolling up.
"It was terrifying. It was absolutely terrifying to see it occur," Mike says.
Swooping him up, they rushed next door to friend Pete Lazzara, a Chicago Fire Department paramedic. Lazzara knew immediately the boy he adored was having a seizure. At the hospital, an alphabet of tests-CAT scans, EEGs, EKGs and MRIs-filled the night. Though Danny's EEG showed abnormalities, Mike and Mariann remember doctors telling them children sometimes have a seizure, then never again.
Yet, that night changed her forever, Mariann admits.
Dread filled the bedtime routine. "I didn't want nighttime to come every day," she says softly.
In the many nights that followed, with Danny sleeping between them, Mike and Mariann didn't sleep, alert for even the slightest movement. "The thing is, we were right there. We could protect him. We had medicine ready," Mike says.
A second seizure struck a month later, just before Halloween, again as Danny slept. After the third, Mike and Mariann faced a major decision: Putting Danny on seizure medication. It was a two-year commitment with big potential for complications. But the medication worked, not slowing Danny down one bit. "He was a champ all along," Mike says.
When Danny moved back into his room with big brother Johnny, Mike and Mariann still found themselves creeping into the boys' room hundreds of times to peer closely into Danny's sleeping face in the bottom bunk bed.
Just to make sure.
Nearly 22 happy, busy months passed.
Hope, then a nightmare
On Dec. 8, 2009, Mike and Mariann met with doctors about Danny's latest EEG. The abnormalities, Danny's doctor told them, looked a little better. "We walked out of there very heartened," Mike says.
Four days later, Dec. 12, they awoke to find Danny's sweet mouth ringed in blue.
EPILEPSY BY THE NUMBERS
More common than you think
- Epilepsy and seizures affect over 3 million Americans of all ages, at an estimated annual cost of $12.5 billion in direct and indirect costs.
- In Chicago and the surrounding region, there are as many as 125,000 individuals with epilepsy.
- Between 5,000 and 7,000 new cases occur annually in the Chicago area. n 200,000 new cases of epilepsy are diagnosed each year. In the Chicago area, that translates to between 6,000 and 8,000 new diagnosed cases annually.
- 326,000 school children through age 15 have epilepsy. In Chicago, that number is between 9,780 and 13,040 children.
Sudden Unexplained Death in Epilepsy (SUDEP)
- Among people with epilepsy in the United States, up to 50,000 deaths occur annually from SUDEP, prolonged seizures and other seizure-related causes.
- The incidence of SUDEP is about 1 in 1,000 people with epilepsy per year. This is at least 10 times the sudden death rate found in the general population.
SOURCE: Epilepsy Foundation of Greater Chicago
As Mariann ran to get Lazzara, Mike lugged their little boy to the big family room and began CPR. In his heart Mike believes Lazzara knew their Danny was gone, but he worked to revive him, as did the Fire Department crew, who also knew the family.
"They worked on him and worked on him and worked on him," Mike says, reliving the horror as their other children watched. At the hospital, doctors tried, too. Though officially pronounced dead at 8:21 a.m., doctors were still pumping his chest at 8:45, Mike says. "Nobody wanted to let him go."
But they all knew. Danny was gone.
Tucking Danny's tiny hands into his chest, Mike and Mariann laid down on the hospital bed and simply hugged their boy.
Nearly an hour passed. "He just got colder and colder. We just kind of took him in," Mike says.
Strength to hold on
On the day Danny died, or maybe the next day, Mike remembers talking with Mariann about how this could tear them apart.
"But we have three other kids. What kind of life are they going to have if we can't work through this somehow? We both know the answer to that. That's not something we're willing to take a chance on. That's what kept us together," he says, sliding his foot to stroke Mariann's.
They began his obituary, ending it with a poignant reminder that would come to define the hard days that followed: "Please go and enjoy your life. Danny did."
The funeral came and went. Life's activities began again. Christmas came and went. Tommy's second birthday needed celebrating. Lunches needed to be made for school every morning. Spelling words needed to be drilled. Diapers needed changing.
Waking up every day continues to be difficult, they admit. Mike yearns for nights he hopes are filled with dreams of Danny. "I hope I get that," he says.
They cry in front of the kids. "We tell them we're OK, that they're OK," says Mariann, grief clearly etched on her pretty face even as she smiles with her kids. It's not always going to be like this, she tells them.
Focus on others now
Mere weeks after Danny's death, something amazing began to grow out of their grief. A non-profit, the Danny Did Foundation, began. In no time, nearly 7,000 people signed on as fans of its Facebook page, seeing daily photos of Danny living life to its fullest and his parents' heart-tugging thoughts and memories.
The foundation's focus: To save other parents from such pain. Mariann says they were never told and didn't ask, "What's the worst possible outcome for Danny?"
The foundation is working with neurologists, medical tech companies, researchers, government agencies and organizations to make sure parents have the information the Stantons never received. Mike and Mariann want parents to know about SUDEP, sudden unexpected death from epilepsy, even though it's rare and doctors are hesitant to bring it up to already scared parents.
"Our goal is for doctors to present the broad range of outcomes that can happen and let the family base their decisions on having the complete picture," Mike says.
Family friend Mary Duffy located a seizure alert device, manufactured by a small company in Finland, something the Stantons wish they had learned about before Dec. 12. Whether it's this device or something else developed by experts, the foundation is working to get a device approved by the FDA that could be as easily prescribed by doctors after a child's first seizure and covered by insurance as a nebulizer is for people with asthma.
"We hope this foundation grows and makes a difference in the world, makes the world a better place, like Danny would have, like he is," Mike says.
It's one parent, one doctor at a time. Mariann checks her grief to answer other moms' questions. Even on Valentine's Day morning, she opened her home to a stranger, a mother just starting the journey with her daughter. What should I do, the mom wanted to know.
"That's what this is all about. That's why we're doing it," Mariann says. "We find the strength in those moments to make sure we are being as clear as possible and trying to give the most information we can, to help."
They are also trying to keep Danny's memory alive, from sharing with the world the 7,000 photos they have of him enjoying life to helping 2-year-old Tommy, who is looking more like Danny every day, remember him. "Tommy, where's Danny?" they ask him quietly.
"In my heart," Tommy says, tugging his shirt.