Not long after her first birthday, Claire Anne Lincoln was on the move. Even before she began walking, the bright-eyed toddler sped around the family’s Mattituck cottage in an Army crawl, exploring and chasing after her 3 1/2-year-old brother, Charlie, whom she emulated.
Each day would bring a new discovery. On a Sunday night in November, as Judd Lincoln cooked dinner, his daughter squeezed into a small opening between the refrigerator and the wall. It was a new spot she had just found. In a five-minute span, Judd fished her out of the tiny space three times.
Even at only 14 months old, Claire had a way of knowing when she was doing something she shouldn’t. But she knew how to play it cool: She’d look over to her parents, smile wide, blow a kiss (mwah!) and wave. And then she was off.
“She already had me wrapped around her fingers,” said Judd, 36.
These are the small, innocent moments that Judd and his wife, Suzanne, 39, hold dear when they reflect on Claire’s brief life. She died suddenly on the afternoon of Nov. 14, just 68 days after celebrating her first birthday with Minnie Mouse cupcakes and pink balloons. In the months that have since passed, as life returns to a new normal for the Lincoln family, memories of Claire are ever-present. Recently, as he sat with Charlie playing with Matchbox cars, something they hadn’t done much since Claire died, Judd was reminded of how his daughter would be right in the middle. She’d snag a car, examine it briefly and toss it aside, inevitably annoying her brother.
“Those were memories that you have, memories that you made,” Judd said.
To lose a child is any parent’s worst nightmare. For the Lincolns, moving forward is an hour-by-hour, day-by-day process. They’ve relied on the support of friends, family and co-workers. A manager at Riverhead Building Supply, Judd said customers have approached him to share stories of tragedies they’ve experienced. One customer, a big, burly man, broke down in tears as he told Judd about his daughter, who had died in a car accident several years earlier, at 18. The pain never eases, the man told Judd; it simply becomes manageable.
Compounding the pain for the Lincolns, however, is one lingering, unanswered question: How did Claire die?
SEARCHING FOR ANSWERS
Claire’s mysterious death was a rare case of what’s known as Sudden Unexplained Death in Childhood. While similar to Sudden Infant Death Syndrome, which involves children less than a year old, SUDC refers to the unexplained deaths of seemingly healthy children ages 1 to 18, according to the SUDC Foundation. It occurs in approximately one out of 100,000 children and affected 236 children between 1 and 4 years old in 2016, according to the Centers for Disease Control and Prevention.
“That’s the toughest part — just not knowing what happened,” Judd said.
Significant research into unexplained deaths has focused on SIDS, and has yielded common guidelines for parents such as placing infants on their backs in a crib. But little is known about SUDC, what causes it or how to prevent it, said Laura Crandall, executive director of the SUDC Foundation.
“We are still at the very early stages of research into these older children,” she said. “What makes it more difficult is that there has never been any public federal funding into studying SUDC.”
In 1997, Ms. Crandall’s 15-month-old daughter, Maria, died while napping. A physical therapist, Ms. Crandall was left with many unanswered questions. She felt isolated. Could her daughter’s death have been prevented? Were there signs she missed? If she had another child, would there be a similar risk?
She co-founded a program in 2001, connecting with a few families who had suffered similar tragedies, as a way to begin research and promote information. The SUDC Foundation, formed in 2014, grew out of that program. It’s the only organization worldwide dedicated solely to supporting research, raising awareness and assisting families affected by SUDC, Ms. Crandall said. Over 800 families worldwide now receive services from the Foundation.
That same year, the New Jersey-based foundation collaborated with NYU Langone Medical Center to create the SUDC Registry and Research Collaborative. It’s a partnership of NYU, Columbia University, the Mayo Clinic and national forensic pathologists. Dr. Orrin Devinsky, an expert in epilepsy and seizure disorders, is its principal investigator. The goal is to create a comprehensive database of SUDC cases that can be researched to one day explain the unexplainable. Over 130 families have enrolled.
Judd and Suzanne recently spoke to Ms. Crandall to begin the process of registering with the collaborative.
“The medical examiner essentially said to us, ‘We’re not giving up, but we need to pass the torch along to somebody who is better suited,’ ” Judd said.
The registration process has three parts, Ms. Crandall said. The first is a full case review by experts including pediatricians, clinical specialists, cardiac pathologists, neuropathologists and forensic pathologists. They examine the mother’s prenatal records, the child’s pediatric records and the death investigation. The second part is an extensive interview with family members to better understand the subtleties of a child’s life that may not emerge from medical records. The third part is a genetic study conducted at Columbia University under the guidance of Dr. David Goldstein, director of the Institute for Genomic Medicine. Both parents, and sometimes other relatives, are screened in that process.
“We know there are some genes associated with sudden death that have been published and are well known,” Ms. Crandall said. “There are genes associated with neurological conditions in terms of severe forms of epilepsy and seizure disorders. There’s also different cardiac conditions that are known to be associated with certain mutations on certain genes.”
When mutations are identified in children, the research team examines them case-by-case to determine whether the altered gene may have contributed to death and genetic counseling is provided to the family in turn.
“I’m not holding my breath that they’re going to find a reason,” Judd said. “But maybe it’s one more case for them to find something and maybe they’ll find something that they hadn’t found in other kids. Maybe they’ll find something that will help in the long run.”
Dr. Michael Caplan, Suffolk County’s chief medical examiner, said his office sees an average of one SUDC case a year. The first he encountered, early in his career, remains a vivid memory. It was Labor Day weekend 1993 and Dr. Caplan had recently finished his forensic fellowship. He was examining a 7-year-old. He performed a full work-up, including X-rays and testing for infectious diseases. He could not find an answer.
“I remember after all of that, I was devastated because it was my job to try to find an answer for this family and I couldn’t,” Dr. Caplan said. “I do remember meeting with them in person. Although I couldn’t find an answer for them, the two things I could show them were all the steps that I did to try to find an answer. And secondly, to tell them what it was not. I was at least able to rule out some things.”
Dr. Caplan said it typically takes a few months, following an autopsy, toxicology reports and ancillary studies, before a case is declared to be SUDC. For example, the medical examiner will try to find any electrolyte abnormalities, dehydration, diabetes or infectious disease that went undiagnosed. Blood and other body fluids can be tested for genetic metabolic abnormalities that could clarify a sudden unexplained death, he said.
“After several months, after doing all of that, that’s when, if there is still no answer at all, it is a truly unexplained death,” Dr. Caplan said.
One day in mid-December, Eric Goodale, Judd’s co-worker at Riverhead Building Supply, pulled him aside. Around the same time, a colleague met with Suzanne at Hyatt Place East End in Riverhead, where she’s a sales coordinator for the hotel and Long Island Aquarium.
These co-workers, along with Mr. Goodale’s wife, Amanda, had hatched a plan to create a memorial in Claire’s honor at Mattituck-Laurel Library.
Library director Jeff Walden got a call from Ms. Goodale, who filled him in on what had happened to Claire and explained their plan for a memorial. Their employers, they said, would handle fundraising to cover the costs.
“She wanted to try to do something special for the family and she thought of the library,” he said.
Mr. Walden and Karen Letteriello, who heads youth and parenting services for the library, began to brainstorm. They quickly agreed on a plan: upgrade the library’s toddler section. At a meeting with library directors, Ms. Goodale and Caryn DeVivo, who also works with Suzanne and has been instrumental in organizing fundraising, suggested calling it “Claire’s Corner.”
“The parents and toddlers of the community will be able to enjoy it for years to come,” Mr. Walden said.
HOW TO HELP
To donate funds toward Claire’s Corner, visit gofundme.com/mgu358-claires-corner. Donations can also be made directly to Mattituck-Laurel Library, P.O. Box 1437, Mattituck, NY 11952.
The goal is to create a new entryway and add bookshelves, new carpeting and interactive toys. Mr. Walden said the final plans will ultimately depend on how much money the library has to work with. A GoFundMe page has already raised nearly $9,000 toward a goal of $20,000.
“We’ve had a lot of people donate things,” Ms. Goodale said. “People are working with us. As Jeff reaches out to different designers for the library and they hear the story, they’re willing to work with the price a little bit and be more forgiving of when they receive payments.”
While Claire had never been to the library, Charlie has been a frequent visitor. Judd said his mom, Nancy, has been taking Charlie there since he began walking. He loves using the 3-D printer and always brings home a little figure.
“That kind of made it a little extra-special,” Judd said.
The support from the community has been overwhelming, he added.
“You really see how much people care for each other,” he said.
More than two months after Claire died, her crib remained positioned at the foot of her parents’ bed. The plan had been for Claire and Charlie to begin sharing a room. But they worried Claire might awaken her brother, a sound sleeper since he was 1 month old, might be woken up by Claire. On the day Claire died, Judd and Suzanne were both at work in the afternoon. Judd received a call from the babysitter alerting him that Claire had been found unconscious. A Riverhead Town police officer rushed Claire to Peconic Bay Medical Center about a half-mile away. Judd called Suzanne and told her she needed to get to the hospital. At PBMC, the couple received the devastating news from a doctor: Claire had passed. Around 8 p.m. they settled back in at home. The exhaustion finally caught up with Judd around 3 a.m. and he fell asleep for a few hours.
He awoke the next morning to a brief moment of peace. Then reality came rushing back as he looked over to the empty crib.
“There are still days it sinks in and hits you a little harder than other days,” he said.
Every morning, Judd begins his day at Cutchogue Cemetery. It’s a chance for him to have a few minutes alone. Becoming a parent has been the greatest gift in his life, he said, and in that peaceful, quiet moment, he can reflect.
“For me, that helps,” he said. “It kind of sets the tone for the day and I feel like, ‘It’s OK.’ ”