Searching for a Reason
Author: Kristen De Deyn Kirk
Ben Baker, a Virginia Beach mechanical engineer, has changed offices twice since last October, which means that twice he’s setup his workspace, arranged his family photos and listened to new co-workers comment on how cute his son is.
"That’s the same one, there," says Ben, sitting on his couch in his living room on a late September morning. He points to his desk and a picture of himself, his wife, Michelle, and Jacob, his little boy with thick hair, bright eyes and an ear-to-ear smile. Ben and Jacob wear Virginia Tech shirts in the picture. "People ask if he’s going to go to Tech, too," says Ben. "That’s when I have to tell them."
On Sunday, Oct. 30, 2005, at 6:30 a.m., Michelle checked on Jacob, who had celebrated his first birthday 11 days earlier. He was sleeping in his crib on his stomach. Michelle decided to stay up, knowing that Jacob, her only child, would wake up soon. A little after 7 a.m., she was surprised that she hadn’t yet heard Jacob babbling to his stuffed animals like he did most mornings. She walked to his room.
"Something felt weird," Michelle remembers. "The room was lighter, sunnier than usual. I felt something." She saw Jacob on his back. He wasn’t breathing.
"I yelled ‘Jacob is dead. Jacob is dead’," Michelle says as tears stream down her face and onto her blue T-shirt. Blue has become her and Ben’s favorite color because it was the color of Jacob’s eyes. Ben raced out of the couple’s bedroom and told Michelle to call 9-1-1. He began performing CPR. The couple saw Jacob’s chest rise once, but not again.
Police, paramedics, family and friends arrived – none knowing what to say or how to help. For five hours, Michelle and Ben laid on the floor next to their son. Then, and now, no one gave them an answer about what happened to Jacob.
If he had been a week and a half younger, doctors would say Jacob succumbed to SIDS – Sudden Infant Death Syndrome. Because he was older, his unexpected death has been labeled SUDC – Sudden Unexplained Death in Childhood, a lesser-known phenomenon that only received a name in 2001.
Michelle and Ben pronounce it "sud-see." They had never heard of it before, but, like most new parents nowadays, they were well aware of SIDS. They had taken the recommended precautions to prevent SIDS and were vigilant about keeping Jacob healthy. Michelle breastfeed for six months, and both parents fed Jacob nutritious foods and regularly took him for well-baby check-ups. He had been born a full-term baby of 7 pounds and 11 ounces and 20 ¾ inches. At his 1-year-old check-up, Jacob was 32 ½ inches and 24.9 pounds. "97th percentile for height and 85th percentile for weight," Michelle recalls.
A former kindergarten and first grade teacher, Michelle stayed home with Jacob. They spent their days reading books and playing outside. "He would get so excited when Ben came home," says Michelle. "We’d sit on the front porch, and when Ben arrived, Jacob would smile and laugh."
Ben, who also wears a blue shirt as he remembers his son, talks about loving their one-on-one time. Dad – or "ga-ga" as Jacob said -- was in charge of baths and late-night feedings. He had given Jacob his last bottle ever at about 1:30 a.m. on Oct. 30. Father and son fell asleep in a rocking chair. Around 3, Ben put Jacob back in his crib.
The only thing different about that night was that earlier Michelle had given Jacob some Tylenol because he felt warm. A slight fever is typical for teething babies, and Jacob’s right molar was breaking through at the time. Also, Michelle notes, he had gotten his one-year immunizations five days earlier.
The couple has spoken with local genetics and infectious disease specialists hoping to find a reason for Jacob’s death. Next, they’ll speak with a cardiologist. They attend Compassionate Friends, a support group for parents who have lost a child, and Michelle sees a grief counselor. The most comforted the two have felt, however, was when they had attended a SUDC Program conference in February.
"For a change, we were in the majority instead of the minority," says Michelle. "People understand the desire to want to hook up other children in the family to every possible monitor. They understand that is not being overprotective. We could talk and talk about our memories of Jacob."
Laura Crandall, a mother whose daughter died in 1997, was the driving force behind the SUDC Program at the Hackensack University Medical Center. "There wasn't anything out there to help people," says Crandall from her home in New Jersey.
She worked with Chelsea Hilbert, a mother who lost her son, and also asked Dr. Henry Krous, a renowned SIDS researcher at Children’s Hospital and Health Center in San Diego, to conduct research. His first report included 50 children.
Published in Pediatric and Developmental Pathology in 2005, it notes that "analyses tentatively suggest a SUDC profile characterized by cases being 1 to 3 years in age, predominantly male and frequently having a personal and family history of seizures that are often associated with a fever."
This was not the case for every child researched, though. Amy Chadwick, a project manager who works with Dr. Krous, says that another study with 30 more children has been provisionally accepted by the same publication. "We have some interesting findings," says Chadwick. "We hope it will be published in about six months."
Dr. Krous’ research would not be possible without the efforts of parents, who have campaigned for research-funding legislation and organized Runs for a Reason to raise money. Ben and Michelle are organizing the First Annual Jacob’s Run for A Reason, scheduled for Oct. 22 at Mount Trashmore. Participants can join in a 5K run, a 1-mile family fitness walk and a silent auction. They can also wish Ben and Michelle well:
On December 23, they’re expecting their second child, who was conceived through artificial insemination, just like Jacob. They know they’re having a girl, but they’re holding off until after October to name the baby. "This is a critical time," says Michelle, who’s 28 weeks pregnant as she speaks. "We want to get through the next month. It would have been Jacob’s second birthday on Oct. 19; it’ll be the anniversary of his death."
While Baby Girl Baker doesn’t have a first name yet (her middle name will be Anne, after Michelle’s mother), she does have two bibs. Michelle bought them a while ago, and they hang from the couple’s mantle. They read "I love my big brother."
Register or make a donation for the First Annual Jacob’s Run for a Reason at http://www.jacobdavidbaker.com/.
