Lily Sateriale was the puzzle piece that completed her family.
“We always wanted a big family. When we had Lily, our whole family dynamic changed. It was like we were a complete family finally,” said Laura Sateriale, Lily’s mother. “We all got along so well. The kids got along. We had a good system.”
Born May 28, 2010, Lily was the youngest of four with twin older sisters, 8, and a big brother, 5. The 20-month-old was perpetually in pigtails, always singing, always laughing.
“She had a dog that adored her. He was her prized possession,” said Micah Sateriale, Lily’s father. “She was just starting to learn how to color, and it really surprised us with how well she could hold a crayon and a pencil.”
“She was always making us laugh. She was really funny, really sweet,” Laura said. “She was a really laid back baby. She was the perfect baby everyone wants to have. She was really easygoing.”
But the Sateriales’ idyllic life with Lily was all too brief. The little girl died on Feb. 16, 2012 in her sleep without an explanation.
Losing Lily
Needless to say, Lily’s passing came as a shock.
“Lily was always healthy. If anything, she was the healthiest of the four,” Laura said. “She was doing really well, growing really well. The day before she passed, there was no indication there was anything wrong. She was running around and playing. I remember her sitting in her high chair having lunch, trying to jump out, and she just thought it was so funny. She was like she always was. She’d just started going up and down the stairs, and she’d been doing that all day. Nothing made us thing anything was wrong.”
The Liverpool family had no history of toddler deaths, and Lily’s most recent pediatric appointment had indicated no problems.
The evening of Feb. 15, Micah and Laura had taken the older kids to their religious education class at their church and arrived home late.
“We were just all over the place,” Laura said. “We put her to bed and said good night, and she got up at midnight and she wanted a bottle, and she was sitting up and she was fine, and then at some point during the night, she passed away, and we had no idea. He went to work, and I was getting the kids ready for the day…”
When Laura went in to check on her youngest, she found her unresponsive. Lily was already gone.
“When you’ve relived it and dealt with it, you can tell the story — not emotionlessly, but you become numb,” she said. “It’s so overwhelming. In the beginning, all of our families came in to town — they live out of state — and they had to just remind us to breathe. You just can’t even function. You don’t even know how to live.”
“You just have to take it one day at a time.” Micah said.
“You just want to stay in bed all day,” Laura said. “But you can’t. You have to keep going for the other kids.”
The Sateriales were also faced with the devastating task of telling their other children that their beloved baby sister had passed away.
“How do you tell them?” Laura asked. “They didn’t really react. I think they were just shocked.”
She said their twin girls, who went to school the day Lily died and had the support of their school and church, have dealt with it more easily than their 5-year-old son, who has understandably struggled.
“Our son has had a lot of trouble with it, a lot of anger issues. He talks about death all the time,” Laura said. “He’s never understood. We never had that talk. We put it off. Now we had no choice.”
What is SUDC?
What made it even harder on the entire family was the fact that there were no answers about Lily’s death. Unable to determine another cause, the medical examiner ruled Lily’s death to be the result of Sudden Unexplained Death in Childhood (SUDC).
According to the SUDC Program website (sudc.org):
“SUDC is the sudden and unexpected death of a child over the age of 12 months, which remains unexplained after a thorough case investigation is conducted. Similar to SIDS (Sudden Infant Death Syndrome), SUDC is a diagnosis of exclusion, given when all known and possible causes of death have been ruled out. By definition, SIDS applies only to the death of babies younger than 12 months, while SUDC victims are past their first birthday whose deaths go unexplained even after an autopsy, a death scene investigation and medical history review.
“SUDC is not new, but it is rare with a reported incidence of 1.2 deaths per 100,000 children, compared to 54 deaths per 100,000 live births for SIDS. Presently, SUDC cannot be predicted and/or prevented since its cause is unknown. Most SUDC deaths occur between the ages of 1 and 3, but researchers have looked at cases of children as old as 15.”
The SUDC Program was created at the CJ Foundation for SIDS in September 2001 by Laura Crandall and Chelsea Hilbert, both of whom lost their toddler-aged children to SUDC and approached the CJ Foundation for support and answers. Today, the SUDC Program raises research funds and provides a centralized resource for information, support and advocacy. It serves families and professionals affected by the tragedy of SUDC, and promotes awareness of SUDC in communities. According to the SUDC Program, research dollars are crucial in uncovering the mystery of SUDC, but no federal funding stream exists for SUDC; most of the money that goes toward research comes from families who have lost a child to the disorder.
The Sateriales said the lack of answers has been one of the most frustrating parts of the whole experience.
“When we called 911, a lot of people started showing up. There’s a procedure they have to follow by law, this forensic whatever, including a thorough autopsy. That was horrendous, but we wanted to know why,” Laura said. “First the viral screens came back negative, then the bacterial, then the toxicology — every category came back negative. Eventually the medical examiner called us, and I remember it was one month to the day after Lily passed, and said, ‘I’m sorry, but this is one of those cases where we’ll just never find out what happened.’ On top of everything else, to have no logic, no reason, no explanation at all… On top of that, if we don’t know, how can we know about our other children? Even now, we still check on the kids five or six times all night long to make sure they’re still breathing.”
Of the numerous theories about SUDC that do exist, none of them pertained to Lily.
“It seems like a lot of the research focuses on certain theories, like theories of heart disease in families and seizures,” Laura said. “A lot of the research suggest that SUDC is connected to febrile seizures, but none of that applied to her.”
The SUDC research center, once located in California, has recently moved to Boston to work with the Children’s Hospital there. The Sateriales are hopeful that they’ll be able to work more closely with the center now that they’re on the same coast, but there are other factors that prove prohibitive.
“It requires a lot of testing, DNA testing and everything, and that’s not attainable for a lot of families,” Laura said. “And there are just so many theories. It’s so early in the research that there’s no way to try to pinpoint anything at this point.”
Lily’s Walk for Answers
To support SUDC research, the family is putting together a walk, Lily’s Walk for Answers, to be held at 10 a.m. Sunday, Sept. 23, at Longbranch Park in Liverpool. Registration begins at 9 a.m.
“We got involved in the program right after we found out that’s what it was classified as,” Laura said. “Some other families had done walks and runs to raise money, and we saw the need for research and awareness. When we talked to our pediatrician and other doctors, they didn’t know what it was, so we knew we had to do something to promote research in the community. Plus, the group was so great to us. They offered support and helped us connect to a network. It’s such a good program.”
The walk includes a silent auction and raffle; prizes include tickets to the Strong Museum of Play in Rochester, a Brinkman gas grill, an American Girl McKenna doll and more.
To register, donate or for more information, visit lilyswalk.org. You can also find the walk on Facebook and Twitter.
In addition to raising money for SUDC research and increasing awareness about this little-known disorder, Lily’s Walk for Answers has the added benefit of letting people in the community know that Lily Sateriale existed.
“We want people to know Lily and remember her,” Laura said. “It’s important to us that people know about her.”
“She was a wonderful child,” Micah recalled. “She was so smart and funny, and she had such a beautiful voice.”
“She had grown up so much in those last months,” Laura said. “She wasn’t a baby anymore. She was one of the kids. It was so amazing to see her little personality starting to emerge.”
The Sateriales are hopeful that the walk and others like it will help to bring an end to suffering like that which they’ve known.
“The worst thing is going to the meetings and seeing other families that have been through this after Lily passed,” Laura said. “If we can prevent another family going through what we’ve been through… I just don’t want someone else to have to go through this.”
