Bereaved mothers warn of rare category of ‘sudden death’ that affects children – symptoms

Baby Boxes created to lower cot deaths

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These extremely sad deaths continue to elude scientific understanding, with SUDC unable to be predicted or prevented. According to the Centers for Disease Control and Prevention, in the USA, in 2020, 390 children between the ages of one and 18 years died suddenly without a clear cause of death determined. Most of these children were toddlers, aged between one and four years. With limited research into the causes of SUDC, many families feel that they are losing loved ones for no good reason. Speaking exclusively to, mother-of-two Sarah Grogan and SUDC UK- a charity supporting families affected by SUDC – CEO Nikki Speed shared their personal experiences.

Sarah, who lost her son Frankie in May 2019 when he was three years old, heartbreakingly detailed the night before he died. She said: “I could tell he was a little bit off but nothing to sort of worry about.

“I gave him a bit of Calpol and then he went to bed fine until about half four in the morning when he asked for a drink.

“His dad was running a 10K the next day so I told him to go back to sleep because daddy was running tomorrow and it is going to be exciting.

“Then when me and my husband both woke up at about seven in the morning we thought it was odd that Frankie wasn’t awake before us, so James went into his room and found him blue in the face. He wasn’t breathing at all.

“So I rang an ambulance, tried to do CPR on him and as the paramedics arrived they tried as well. He was rushed off to hospital but they said there was nothing they could do and then he passed away.”

Unaware of exactly why Frankie had passed away, Sarah and her husband James couldn’t even ask medical professionals, as even they had never heard of the condition SUDC, making the terrible ordeal even worse.

When asked if there were any signs of symptoms that may have indicated something was wrong with Frankie, Sarah added: “The only thing that we sort of have learned about due to the post mortem and afterwards is that he suffered from quite a lot of febrile seizures in his life.

“This is where the temperature shoots up really fast and they have a seizure. It was always kind of connected with tonsillitis or an ear infection and each time we went to the hospital, they told us that he would grow out of it.

“Because Frankie didn’t fall under the Lullaby Trust, as they focus on the unexplained deaths of babies, they tried to help us, but I was just looking and looking and came across SUDC UK about four months later.”

The Rare Disease Database explains that nearly all children with SUDC were thought to be sleeping before becoming unresponsive.

Prior, the children’s development is considered normal and are either in a good state of health or have mild symptoms of illness such as cold symptoms or fever before passing away.

A febrile seizure is a convulsion in a child that may be caused by a spike in body temperature, often from an infection. Children aged three months to five years may have febrile seizures.

There is a slight tendency for them to run in families. If a child’s parents, brothers or sisters, or other close relatives have had febrile seizures, the child is a bit more likely to have them. The NHS explains that these seizures usually last for less than five minutes during which children will become stiff, their arms and legs may twitch, they might lose consciousness or start to foam at the mouth.

Nikki lost her daughter Rosie in 2013, who she described as a “very happy and completely healthy child,” until suddenly one night aged two and a quarter, she died in her sleep.

“I still don’t know why she [Rosie] died to this day. Our whole family felt very isolated and alone, we had never heard that this was possible,” Nikki explained. “So along with two other grieving mums that had had the same thing happen to their sons, Rex and Yianni, we decided that we really wanted to help other families feel less alone and stop this hopefully happening in the future.”

Together, with support from an affiliate charity in the U.S., they created SUDC UK which is committed to help researchers further understand and expand on the subject.

In December, a breakthrough publication revealed data on the first genetic risk factors identified for the sudden unexplained deaths of children over one year.

Global expert paediatrician and researcher Prof. Peter Fleming CBE commented: “Unexpected death of a child of any age is perhaps the greatest tragedy any family can experience.

“I give my strongest possible support to the work of SUDC UK – supporting bereaved families and facilitating research aimed at understanding and preventing unexpected deaths of children. I am convinced that with the right research we will soon be able to prevent many such deaths.”

Nikki added: “As a charity we wanted to help parents have a voice, fund research and raise awareness with the public and medical professionals. Sudden infant death syndrome (SIDS) which affects babies up to 12 months has 1000s of papers published and there is fantastic work to investigate and research into it, but there are only 50 scientific research papers on SUDC. SUDC is a category of death and there will be multiple reasons why these children are dying. There is such potential to identify the risk factors and save lives if we talk about SUDC and fund research.”

“This is the fifth leading category of death in children aged one to four and it deserves attention and funding for research to find out why these older children are dying without reason. March is SUDC Awareness month, please stand with us and help shine a light on Sudden Unexplained Death in Childhood.”

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