At fifteen and a half months old in 1997, Maria Crandall was growing up nicely and was the “happiest little kid,” according to her mother Laura Gould, a research scientist at the Grossman School of Medicine at New York University. “There was no cause for alarm.”
Maria had a fever one evening. She “seemed to be back to her happy self” by the next morning, but Gould was unable to rouse her after Maria’s nap later that day. Gould began administering CPR. After they arrived in a flash, emergency medical experts transported Maria to the hospital. Sadly, Gould’s daughter passed away while she slept.
“You imagine it will be like TV and then, bam, they’re going to wake up,” Gould explains. “Plus, it was already too late.”
Gould believed there had to be something she overlooked. However, the autopsy revealed nothing amiss, according to the medical examiner. Gould’s involvement in the enigma surrounding Maria’s demise contributed to the development of an entire field of study on unexpected pediatric fatalities.
Children one year of age and older fall into the category of sudden unexplained death in childhood, or SUDC. It signifies that there is still no explanation for the child’s death following an autopsy, examination of the child’s medical history, and investigation of the circumstances surrounding the death. The majority of these fatalities happen while a youngster is asleep.
According to the U.S., 400 youngsters in the country who are 1 year of age or older pass away mysteriously every year. the Centers for Disease Prevention and Control. Little children, ages 1 to 4, account for the majority of these deaths. Approximately 3,400 babies in the US pass away unexpectedly each year; in contrast, sudden unexpected infant death, or SUID, is far more common. Sudden Infant Death Syndrome (SUID) is the term used to describe various unexpected deaths in children under the age of one.
Gould was a neurological physical therapist at the time of her daughter’s death in 1997, and she looked for explanations. All the information she could uncover concerned babies who had passed away suddenly. In 1999, while attending a seminar on unexpected newborn deaths, she got to know pathologist Henry Krous of San Diego’s Rady Children’s Hospital. Gould and Krous were cofounders of the San Diego SUDC Research Project, which was the first large-scale investigation of pediatric sudden unexplained deaths. The team created a questionnaire for parents and gathered all of the information that was available on SUDC cases, including autopsy reports and medical records. Scholars scrutinized the data to seek patterns among these demises.
searching for hints to decipher SUDC
The study revealed a link between SUDC and fever-induced seizures as one of its leading leads. About 2 to 4 percent of children under the age of five experience these febrile seizures, which are usually regarded as innocuous by the medical profession. However, it was shown that SUDC-affected children’s medical records frequently included information on seizures. According to a 2009 study by Krous, Gould, and colleagues, 24 percent of the 49 toddlers with SUDC had a history of febrile seizures. Nearly thirty percent of children who die for unknown reasons had a history of febrile seizures, according to later study.
Krous departed from the San Diego SUDC Research Project in 2012. Gould then began working with Orrin Devinsky, a neurologist at the Grossman School of Medicine at New York University. Devinsky is a specialist in epilepsy, a brain condition characterized by recurrent seizures, and abrupt unexpected death. The SUDC Foundation was established in 2014 by Gould, Devinsky, and others to generate money for research and to give families information and support. In an effort to increase the range of research they could do and the quantity of biological specimens and other data they could gather, Gould and Devinsky founded the SUDC Registry and Research Collaborative at NYU Langone Health in the same year.
Through the foundation or independently, families can become aware of the NYU registry. Sometimes even before the autopsy begins, medical examiners refer SUDC cases to the register. This implies that the registry can scan the entire brain to look for changes in kids with SUDC, provided the parents provide permission. According to Gould, there are more than 350 families on the NYU list. Among the youngsters, about 80% passed away between the ages of 1 and 4.
Gould assists families in making enrollment decisions. She occasionally speaks with folks hours or days after their lives have irrevocably changed. Gould recalls her feelings of “absolute numbness” upon her daughter’s passing. She shares her story and assures families that she is available to them for any questions they may have, regardless of whether they want to participate in the research.
Seizures captured on video before to SUDC
Some of the enrolled families have eventually been able to contribute films from security systems or crib cameras. Unexpectedly, these pictures of their kids asleep had caught their last moments.
A group of forensic pathologists and neurologists with expertise in epilepsy examined seven recordings of 13 to 27-month-old children that were sent to the registry. According to a January 2015 Neurology paper by Gould, Devinsky, and colleagues, six of the youngsters looked to have experienced a seizure just prior to their passing. Some of the kids seemed to breathe irregularly or laboriously after the seizure, and then they went still.
According to Gould, the videos provide more proof that seizures most likely have a significant part in SUDC. However, it’s still unknown why these kids’ brief convulsions are followed by their deaths. Heart rate and brain activity data for the children in the video research were not available to the team. However, Gould notes that a study of individuals with epilepsy—which frequently happens during or after a seizure—may provide some insights. These individuals were being assessed in epilepsy monitoring units, which provided data on heart rate, brain activity, and other parameters. Prior to their untimely death, the deceased had irregular breathing and heart rates.
According to Gould, “the vast, vast majority of children with febrile seizures will do just fine.” “We don’t want to scare everyone,” she adds, adding that identifying the children who are at danger is a major focus of the research. This would also help with pediatricians’ recommendations and family advice, which can include monitoring susceptible youngsters while they sleep.
According to Gould, without the contributions of numerous scientists from various fields, medical examiners, and the families—“the families, who say, this is the worst thing that’s ever happened to me, learn as much as you can from it to help someone else”—this 25-year-long research project would not have reached this point.
Numerous medical experts informed Gould that Maria’s daughter was the sole case of her kind they had ever seen when she passed away. According to her, it was very alienating to have no one who could understand what she had gone through. “One of the things I always want every family to know is that you’re not alone,” the speaker says to bereaved parents.
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