'My 3-Year-Old Son Died Unexpectedly, It Took 2 Years to Get Answers'

It was Boxing Day 2021, and 3-year-old Alexander Cooper may have felt under the weather, but nothing was going to stop him from enjoying his new toys and feasting on a wonderful family dinner.

However, when he vomited after lunch, his mom, Emily Cooper, took the toddler upstairs to get cleaned up. "I took him for a shower and got him changed, then he told me he felt better, which will haunt me forever," she told Newsweek.

She had no concerns because "he was a perfectly healthy boy," and it seemed like a normal stomach bug, so Cooper, 35, hoped that some rest was all he needed. Once Alexander was settled, his mom, who was pregnant at the time, decided to head outside for a walk with her youngest son, Freddie, 2 at the time, to get some air. Alexander stayed home with his dad, Darren.

"I was out for a little while and left my phone on silent, which I've never done ever again. I came home to a police van outside my house. I had no idea what was going on because I hadn't been looking at my phone, which was unusual for me.

"My first thought was, 'What's happened to Darren?' And then somebody said that Alexander had a seizure, but I remember thinking. 'He's had seizures before; why are the police here?'"

At the hospital, Cooper, from Lancaster, northwest England, was informed that her son had a seizure and his heart had stopped, so they were trying to stabilize him. The horrified parents had to watch as doctors and nurses attempted to resuscitate their son, but there was no saving him, and Alexander died.

The Cooper family were forever changed by the events of Boxing Day 2021, as their happy and healthy son was gone in an instant, and they were left with no explanation. The weeks and months following were a blur, as Cooper recalls being in a state of shock. "How can a healthy child just die out of the blue?" she said.

"At a postmortem in February [2022], they said they didn't know why this happened to him, and the general lookover didn't immediately suggest anything obvious. They were baffled, and after doing an initial look at his organs, they didn't find anything."

Alexander's death was labeled as sudden unexplained death in childhood (SUDC), a category of death that remains inconclusive, even following an investigation. It is thought that approximately 40 children are affected by SUDC each year in the U.K, while the SUDC Foundation says it took the lives of 249 children in the U.S. in 2021.

There is no known cause for SUDC, nor any warning signs to predict if a child may be affected. It's thought that, in most cases, a healthy child will simply go to sleep and sadly never wake up.

It was, and forever will be, harrowing for Cooper to live in a world without her firstborn child, and yet she had no answers for what caused his death. When she looks back now, she often wonders how she even made it through those early months after his passing.

"You just you feel very alone and isolated because everybody's asking questions that you can't answer, and you just want to just lock yourself away," Cooper told Newsweek. "There aren't any answers, and it almost feels like people don't believe you when you say that."

How Genetic Testing Provided Answers

As Alexander's death remained unexplained after the post-mortem, Cooper and her husband made the decision to retain samples for future testing. She thanks her background in academia for this foresight because it has proven a lifechanging decision for the family.

In March 2023, both parents got samples of their blood taken for genetic testing, with the long-awaited results coming during a phone call in November.

Cooper said: "When they said they found an answer, there was this pause, and I thought, 'Even after all this time, we've potentially got something that could explain what happened.' Initially, it was positive that we got an answer, but as the call went on, I was told about a recessive inherited condition, and I just knew that my other children were at risk."

The test revealed that Alexander died from a genetic abnormality, known as PPA2 mutation, which his parents were both carriers for. Further testing indicated that the couple's oldest daughter Isabelle, who is almost 2 years old, also has the mutation, and their youngest daughter Sophia, born in January 2024, is a carrier. Their son, Freddie however, is unaffected.

This discovery was "a mix of trauma, disbelief, and terror" for Cooper, because, although they had answers for Alexander's death at last, they learned that their daughter would have to live with the same mutation that tore their family apart.

"It feels like you've had this asteroid land on your house because you've already gone through it once, but then, all of a sudden, your new normal is going to be completely turned on its head once again," Collins said. "It's very strange to live knowing that Isabelle has this time bomb that may or may not go off."

There is no way of knowing how it will impact her, if at all, but the family are taking precautions wherever possible. For now, Isabelle has an external defibrillator that goes everywhere with her in case of a cardiac event, and her development is closely monitored for any neurological signs. The family also know that, when she is older, she will have to avoid alcohol at all costs.

Results like this are exactly why Dr. Alison Krywanczyk, from the board of directors of the SUDC Foundation, said that "access to genetic testing is critical" if we are going to understand why so many children die every year. The SUDC Foundation, which was set up by bereaved mothers, provides both expert and peer support for grieving families, as well as fundraising for research, which is desperately required.

The discovery of a genetic mutation in Alexander's case is a pivotal moment for the Cooper family, but Krywanczyk said that there is still so much more to learn about SUDC. Further education, awareness and advocacy are required to help the many bereaved families who are left without answers, as Krywanczyk added that "one child gone is one too many."

She said: "The PPA2 gene encodes a protein which is involved in cellular metabolism. We know that mutations in this gene are associated with sudden cardiac arrest in childhood and infancy, but this only explains a miniscule percentage of SUDC cases. In some situations, there may be a complex interplay of genetic factors."

How the SUDC Foundation Helped

Everyone deals with grief differently, and having answers is often a huge part of coping with loss. But what do you do when there are no explanations? For two years, test after test showed absolutely no reason for Alexander's death, leaving the Coopers wondering why it happened, and if there was anything they could have done to save him.

In 2022, Cooper connected with the U.K. affiliate of the SUDC Foundation, where she met other families who also knew about its devastating impact.

One representative of the foundation who has been a huge part of Cooper's journey is Nikki Speed. She has worked with many families left asking countless questions about what took their child's life.

Speed told Newsweek that SUDC "is one of the most under-recognized medical tragedies of our time." People sometimes compare SUDC to sudden infant death syndrome (SIDS), which affects children under the age of 12 months, but they are vastly different and far more is known about SIDS.

PubMed has published over 13,400 research papers about SIDS, but when it comes to SUDC, there are only around 60 papers in comparison; this is despite it being the fourth-leading category of death of children between 1 and 4 years old in the U.K.

"SUDC normally happens to developed children from normal pregnancies, and there is an association with fever and seizure. At this point, research is needed to understand the importance of the seizures and to identify which children in that large population may be at risk," Speed said.

So little is still known about SUDC, which is why Speed wants to raise its profile to generate greater awareness and, importantly, more funding. Thankfully, the Coopers kept Alexander's samples to be tested, but not all families are aware of this. Speed hopes to ensure that every family knows the significance of this decision, which may provide them with answers one day.

"There are lots of different reasons why children are dying, so the ideal solution is that we identify the subsets and begin to identify the risks, and put preventable measures in place. Science will evolve; we will learn more," Speed said.

As for Cooper, who welcomed baby Sophia a few weeks ago, she tries to focus on living "life as normally as possible" so her children can have the happiest upbringing they could wish for. It's not always easy to find light during such dark days, but Cooper said: "Living our life minute by minute, finding the tiny joys, is more helpful than looking too far ahead."

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