A local mom's devastating loss inspires lifesaving efforts against SIDS

Hundreds of infants die every year in the state of Illinois, most often due to unsafe sleeping environments.

The executive director of SIDS of Illinois, Nancy Maruyama, said after her son died unexpectedly during a nap in the 1980s, she made it her mission to help others. 

In 1985, her son was only four-and-a-half months old when she dropped him off at the babysitter while she went to her nursing job. Less than 10 minutes into the infant's first nap, the unthinkable happened. 

"She had him in the crib, and he was on his belly because that's what he did. There were bumper pads because that's what we did. And she had a feeling that something was not quite right. She ran in to check on him and he was not breathing. So she called me. And, of course, I screamed, ‘Call 911,’" said Maruyama.

Her son, Brendan, died of SIDS, which is now referred to as SUID or Sudden Unexpected Infant Death. 

Every year in the United States, there are about 3,400 SUID deaths. 

In 2020, 41 percent of those deaths were caused by SIDS, 32 percent were unknown and 27 percent were accidental suffocation or strangulation. Nearly all of these baby deaths happen in unsafe sleep environments. 

A Cook County report from 2020 showed 99 infants died suddenly and unexpectedly and 96 of them were sleep-related. 

Of those 96, 87 of them died with soft bedding nearby and 71 of them died with soft bedding and while sleeping with another person, known as co-sleeping. 

Since her loss in 1985, Maruyama became the executive director of SIDS of Illinois, where they find parents who may need support, and hand out items, like cribs, free of charge. 

"We know the answer is not only giving cribs, that if it was that simple, we would all be doing that and everybody would be fine. But it's a matter of the education piece and what we talk about a lot is the accidental suffocation," said Maruyama.

SIDS of Illinois doesn't just pass out hundreds of portable cribs every year. They also pass out supplies for new parents and work with health departments, hospitals and even police departments across the state.

"Nancy and I — we sit on what's called the Illinois Child Death Review Team. So we review, aside from the cases that I have or we review cases that happen all over in an area, and we look at some that could have been prevented," said Det. Jennifer Hillgoth of the Aurora Police Department.

The Child Death Review Team is run and managed by the Illinois Department of Children and Family Services. 

Hillgoth works on most child death cases in Aurora. She approaches every call with compassion, showing up and asking the parents or guardians detailed questions. 

"I try to explain to them my purpose is to help get them answers. This isn't criminal. Nobody's in trouble. Nobody did anything wrong. It's just trying to help give them answers," said Hillgoth. 

She says her job is to help the coroner determine the cause and manner of death, not to assume something criminal took place. 

"The misconception is that police are involved only in criminal investigations, that I must have done something wrong, the police are here. And that's not true. Although it is a part of our job so I can understand the barriers that we face when we're responding to these deaths," said Hillgoth. 

She responded to a handful of child death investigations a year in Aurora. 

In 2021, there were four cases, and in 2022, there were two. Last year, there were three, and so far in 2024, she has worked two child death cases.  

So, how do we prevent any of these stats from happening? 

First: start with the child's bed. 

Maruyama said there should be nothing extra in the bed. No blankets, bumpers or toys, lanyards for pacifiers or diapering materials. 

The ABCs of safe sleep include placing a baby alone, on its back and on a flat surface like a crib. 

For proper safety standards, you want a crib built after 2011, a pack-n-play built after 2013 and a bassinet built after 2014. Weighted sleep sacks or suits are also not recommended. 

Though Maruyama said she still feels the pain of losing her son, she said he has helped her find a space where she can help others. 

"I also believe that his life was only meant to be 140 days. That was all that was ever planned for him. But it brought me to where my place in the universe is," said Maruyama. "If we can change one outcome and save one baby, it's all worth it."

If you have questions, contact your pediatrician or call SIDS of Illinois. The phone number is 630-541-3901.

SIDS of Illinois will even go through your baby registry with you to make sure you have the safest products.