When Alyssa Genshaft gets an email alert from the private online group to which she belongs asking her and others to greet a new member, there are no exclamation marks implying celebratory hugs, virtual high-fives, or symbolic welcome wagons. A new member means another infant or very young child has died, and his or her disoriented, devastated, and destroyed parent is looking for something — anything — in the way of an explanation or just some emotional support from others who have unfortunately been in the exact same position.
Alyssa’s youngest child, 17-month-old Max, was found dead in his crib on Jan. 18, 2013, by her husband, Ben. Max wasn’t sick. There was nothing wrong with him on the evening of Jan. 17. He cheerfully bathed with his two older siblings, chatted animatedly on Skype with his cousins in Ohio, and blissfully snuggled with Alyssa as she read and sang to him in the rocking chair in his room before she kissed him softly and laid him down to sleep for the night.
The immediate and then, ultimately, more time-consuming, detailed autopsy found no obvious cause of death. There was no hole in his heart, brain aneurysm, cancer, or anything that would have given a black-and-white, concrete explanation as to why a tremendously loving toddler with a gloriously emerging personality should have left the earth decades before his time.
Most parents are aware of SIDS — Sudden Infant Death Syndrome, which is defined by the Centers for Disease Control and Prevention as “the sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.”
Most parents know that infants should not be exposed to second-hand smoke. We know that pillows, blankets, drop-sided cribs, and crib bumpers can be life-threatening hazards. But sometimes — without even the tiniest explanation or reason — they die. The Genshafts knew all the risks and avoided them all. Max died anyway.
What many of us don’t know, however, is that sometimes older children die without explanation, which may be termed Sudden Unexplained Death in Childhood (SUDC). According to a website devoted to the problem, it “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.”
Dr. Henry Krous, who was the director of the San Diego SUDC research project from 2001 to 2012, says “at the present time, there is no way to prevent SUDC as its cause(s) is not known. It is hoped that future research will identify means by which SUDC can be prevented. If and when risk factors are identified, such as prone sleep position for SIDS, then one might anticipate reduction in the risk of SUDC. In the meantime, follow optimal pediatric care recommendations, including attending well child visits, maintaining current vaccinations, and obtaining appropriate health care when clinically indicated.”
SUDC is not a new phenomenon, and thankfully it’s relatively rare, with “reported incidents in the United States of 1.4 deaths per 100,000 children between 1 and 4 years of age, compared to 54 deaths per 100,000 live births for infants who died without explanation in 2009.” But if your child is among the 1.4 SUDC deaths, surely you will agree that 1.4 is far, far too many. It should be noted that while the “reported” cases include children between 1 and 4 years of age, SUDC occurs in older children, however, it has a higher instance of happening between the ages of 1 and 4.
But like the great strides that have been taken to make parents aware of the risk factors of SIDS, and even just of its existence, there is now a movement underway to make SUDC just as well known. In fact, a milestone has just passed and while there were no balloons or cakes in celebration, there were still many silent cheers nonetheless.
Last week, it was declared that from here on out, Feb. 28 is SIDS/SUDC Awareness Day in the state of New York. A dad named Greg Spina, who lost his beloved Ethan to SUDC, made the trip to the New York capital of Albany on the day the resolution was presented by Senior State Assemblyman Harvey Weisenberg, saying he is “carrying the strength and love of all our little ones on that day and will make sure that every single infant, baby, toddler and child that was taken from us has their voice heard and remembered, and am [I] am humbled to do so.”
Spina says that Feb. 28, 2014, was “a whole year, 365 dreadful days, that we [woke] to that deafening silence of [Ethan] not being here. The strength and love that Ethan still gives me is what keeps me going, day by day, some days hour by hour . . . So this accomplishment [is] his mark.”
“I hope and pray that one day the medical community gains the knowledge, through information organization and research, of what causes our babies to be taken from us like this, so that not a single other parent endures the horrific pain that we all have come to realize as ‘normal’ life now,” Spina said.
As with SIDS, there’s still so much to be learned about SUDC, including if it’s hereditary. Dr. Krous writes:
This is a difficult, if not impossible question to answer at this time. There is so little known and published about the sudden death of children beyond one year of age. The current medical literature seems to indicate that in the majority of cases there may not be an increased risk of the subsequent child dying. But much research needs to be done to establish the true risk for subsequent siblings.
There are inherited or genetic disorders that can cause sudden death; this is one of the reasons that comprehensive postmortem examination is very important. By identifying the disorders, appropriate pregnancy counseling and medical management of subsequently born children can be undertaken.
Since SUDC cannot be predicted, as the New York State proclamation stated, “it is imperative that there be greater public awareness of this serious health crisis, and more must be done to increase activity at the State, local and national levels.”
And that is precisely the point: when so little is known, what needs to be known is that SUDC exists — that having children reach the milestone of their first birthday doesn’t mean they are out of the woods in their cribs and that parental and medical vigilance remains critical.
With any hope, the now-annual recognition in New York State to keep the memories of sweet souls like Ethan and Max alive will help their families, if not heal, then at the very least have returned to them some of the love that has been ripped from their broken, aching hearts.
For more about Sudden Unexplained Death in Children and to make a donation towards research and a cure, please visit the SUDC website.
Photo credit: Alyssa Shenk Genshaft