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Home / Health / "He was cold as ice": Hundreds of children die each year without explanation. Her parents are pushing for answers.

"He was cold as ice": Hundreds of children die each year without explanation. Her parents are pushing for answers.



It was on a stormy but otherwise typical Tuesday morning when Jeff Frank of North Aurora woke his 16-month-old son Emmett and noticed him in an unusual sleeping position: the posture of a yoga child. When he turned him around, Emmett had already left.

Joe and Nicole Wesolowski of Naperville prepared their older daughter for bed when they decided to look after 15-month-old son Ryan, who had been sleeping in his sleep crib since earlier that evening. He had stopped breathing.

And when Raquel Torres of Glenview tried to wake her 2-year-old son Julian for this day, she could not. "He was cold as ice."

All their children had died for hours. And years later nobody can tell them why.

Sudden Unidentified Death or SUDC (SUDC) is referred to as the death of a child aged 1

to 18 – although most infants are – with no known cause, even after an autopsy and investigation by doctors, sometimes police officers and children's aid officials. These children are older than the 12-year limit for sudden infant death syndrome, typically referred to as SIDS, and have overcome the risk of asphyxia during sleep, a factor in sudden death in younger infants.

Now parents, researchers and other advocates are looking for answers: they are working for a federal law that will fund the research of the SUDC and improve the classification and investigation of these deaths. The first step, according to the researchers, is to accurately count those deaths and hope that one day they will find common connections that can not only provide devastated families with answers, but also provide lifesaving measures similar to those of safe sleep campaigns, to those on the whole Country the SIDS rates have been lowered.

The New Jersey SU The C Foundation and the Centers for Disease Control and Prevention estimate that around 400 children in the United States die each year from these mysterious deaths – the fifth leading cause of death among those aged 1 to 4 – although the Researchers say the number is probably higher. Nevertheless, the SUDC is largely unknown even in medicine. Families say their doctors have never heard of the children's deaths.

Torres, whose son died more than two years ago, still can not understand.

"There was no indication that he was ill," said Torres in tears. She is still persecuted by this question: "Is there anything I could have done?"

& # 39; save my baby & # 39;

On the way of Kristy Frank on the 15th of October 2013 – her 33rd birthday – she looked at the sleeping son Emmett. but a voice in her told her not to go in the room before going to optometrist's practice with her husband.

Not long after, Jeff Frank got the husband The older sons of the sons – then 6 and 4 years old – and ready for the day. When he wanted to get Emmett and turned him around, the toddler did not breathe and felt like "dead weight" in his arms. The father laid his son on the ground and started resuscitation when he called that his 6 year old 911 should call. The boy then also called his mother's cell phone, unaware that she had left it at home. Her voicemail recorded the next few minutes as Jeff Frank shouted "Save my Baby" to the paramedics who arrived. They soon told him his son was already dead.

After Jeff Frank called his wife at work, a police officer had to confirm what he told her because she did not believe him. "He had just seen the pediatrician (for control) a few weeks ago," she said.

When Kristy Frank returned home, Emmett was wrapped in a blanket so she could hold him one last time before the coroner took him away. Because there was no obvious cause of death, the police and the Children and Family Ministry of Illinois were investigated. The Franks were forced to take their other children into custody, and they could not be alone with them for about a week until the DCFS cleared them, they said.

In the following days, Kristy Frank said she was going to roam the house I do not know what to do with her hands because she was used to carrying around Emmett, a loving, happy toddler who liked to hug herself and his parents patting his back when he hugged her.

"I thought she would do it, blame me," Jeff Frank said. "I've been thinking for months that I'm the cause of his death."

Over time, Jeff Frank said, he learned that his son's death was beyond his control. Although he accepts that he can never know why, he hopes to find answers. "There must be a reason."

In search of answers

In seeking answers, the Franks, along with more than 100 families across the country, have sent medical records and blood samples from their country to deceased children and themselves to the SUDC registry and Research Collaborative, funded through private donations, mostly through the SUDC Foundation.

Dr. Orrin Devinsky, a neurologist at New York University's Langone Medical Center and senior investigator of the SUDC's research collaboration, said he was looking for genetic mutations between these children and their relatives and also looking at other medical information in an "extremely understaffed population." "While SIDS has received millions of dollars in research and education from the National Institutes of Health and CDC," SUDC got zero, "said Devinsky.

He has teamed with more than 30 other physicians and scientists in a variety of disciplines, including medical examiners and coroner examiners, who review the children's medical records and investigate their deaths. They also interview the participating families.

In the four years since the start of SUDC research, Devinsky and his colleagues have found that 30 percent of the children he examined had feverish seizures in the past, or a seizure caused by fever. These seizures would rarely lead to death in the general population, but they accounted for a significant proportion of the children in the study. He also found that almost all of these children die while sleeping, and 8 percent had a mutation in a gene that affects the heart or brain, which could be responsible for their deaths.

But "the vast majority remains unexplained". he said. When more families who have lost a child due to an unexplained death hear from SUDC and the research collaboration, Devinsky said, its sample size will increase, and thus the chance that its research will provide answers.

Laura Crandall was a parent for such responses more than two decades ago.

Crandall, the Executive Director of the SUDC Foundation, founded the organization after her daughter Maria died suddenly in 1997 at the age of 15 months. When no one could find a cause, Crandall sought answers and support, but only found information about SIDS. What started as a program for a major SIDS organization some 20 years ago became a non-profit organization more than four years ago. Crandall now supports 800 families worldwide by leading them to collaborative research while providing support for mourning work.

"We try to bring families together … to reduce isolation," she said.

The Foundation has named the March SUDC Awareness Month, and has also helped shape upcoming federal laws. Scarlett's Sunshine Act was named after a 16-month-old girl from Pennsylvania, Scarlett Pauley, who died in January 2017. Her mother, Stephanie Zarecky, who now works for the foundation, went to her sleeping daughter before she went to bed and found Scarlett

Zarecky had once worked for US Sen Bob Casey, D-Penn. After learning of Scarlett's early death, he introduced the legislation, he said. The bill would in part provide federal funds for a CDC study on sudden infant deaths and sudden infant deaths and would grant subsidies to local authorities to improve child screening and data collection.

Horror of losing a child, "said Casey. "It's a lot worse if you do not get your answers."

Examination of Child Deaths

The National Association of Medical Examiners and the American Academy of Pediatrics review with a SUDC Foundation Grant on how to investigate child deaths. Their findings and recommendations will be published in a book later this year, Dr. Eric Eason, an assistant physician in the office of Cook County Medical Examiner, who has been involved in the project. […] The local bodyguard or the medical examination office will perform an autopsy to determine the cause of death

When does a child die and it is not clear? said Eason. In Cook County, about ten percent of the deaths of children aged 1 to 18 years have not been explained after this trial.

At this point, the coroner issues a death certificate that says "indefinite" the same terminology, he said, and this term is problematic.

"If a death certificate is set indefinitely, it can mean that a death is suspicious and often a stigma exists," Eason said.

Dr. Vincent Palusci, a professor of pediatrics at the New York University School of Medicine who worked on the project, said the upcoming book will provide pediatricians with pointers on how to deal with their patients' sudden deaths and improve their awareness of SUDC.

"In general, children in a pediatrician's career may have one or two children who die unexpectedly … and most of these children will be toddlers," Palusci said. This unknown adds that further training is required. "I not only help the family to overcome this grief," said Palusci. "What do I recommend to you for your surviving children?"

Anxiety

Families that have lost children to sudden unidentified death describe the fear of having other children. They teach their children to have heart monitors while they sleep, check them constantly during the night, and desperately search for medical tests to make sure they're okay. The image of looking for a dead child "haunts you," said Jeff Frank, who used a heart monitor for his daughter, who was born after the death of his son.

Artavia Cleveland, from Canton, Ohio, said she's constantly worried about the loss of her 2 1/2-year-old son, Tayjon, in August 2016, especially at night Although Tayjon was adopted, he is a biologist is related to the adopted daughter of Cleveland. And because she does not know why Tayjon died, she worries about all her children.

Cleveland described her ritual of tiptoeing into her little son Tyler's room every night. "They hold their breath and listen and wait to see if he's alive." And when her older children fall asleep, "go into panic mode."

The Wesolowskis bought heart monitors for the children who had died after Ryan Unexpected 17 March 2015. While son Weston, now 3 years old, has outgrown his monitor, one-year-old daughter Quinn still sleeps with her, said Nicole Wesolowski , "We are overly cautious," recalls Joe Wesolowski, who recently scolded his older daughter Natalie, 9, for not wearing gloves on a cold day. "I just do not want anything to happen to them."

"Losing a child is horrible, no matter what," Nicole Wesolowski said, describing how she was constantly questioning what could have happened. Was it Ryan's blanket? Was it the slight cold he had? "That it happens so suddenly, and there is no reason? How do we prevent it from happening with our other children?

Estuardo and Raquel Torres said they would find comfort in the other families they met through the SUDC Foundation who know what they are going through.

After their son Julian died, they did not know the term SUDC until Estuardo Torres came to the foundation's website when searching the Internet for a possible cause of death.

Families like theirs "wake up to their worst nightmare and do not know where they are going," Raquel Torres said. "Not having that closure, not knowing it? It's very difficult."

kthayer@chicagotribune.com

Twitter @knthayer

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