Unexplained Child Deaths (Crib Or Cot Deaths / SIDS / SUDC)

[Mighty_Emperor]

I'm not looking for a broader discussion on cot death but some aspects of this certainly have a Fortean feel:

1. It is something we know very litle about and what may be a wide range of causes of death seem to have been lumped together under one umbrella.

2. A large number of people have been convicted (and their children taken into care) on the say so of a scientist - his whole conclusion was anti-science. What he essentially said was that the chance of one or more cot deaths in a family was highly unlikely when he should have said we don't know enough. In fact this should have indicated to him that there may have been a genetic component that was causing some o fthes ecases.

3. It seems to me (although I'm not sure of the numbers) that the mother seems to be disproportinately blamed for this when there is rarely any evidence to suggest which (if any) parent was responsible (if in fact anyone was).

In some ways it stirkes me more something along the lines of Satanic Ritual Abuse or witch trials and certainly impinges on unquestionably relying on 'experts' (as an earlier incident where a forensic scientists work was shown to be fundamentall flaed and a huge number of cases had to be reviewed).

Or am I mistaken?

For thsoe not up with the news in the UK:

Wider cot deaths review considered

Thousands of parents whose children were taken into care may have their cases re-opened as part of a wider review of cot death legal cases.

Solicitor General Harriet Harman told MPs a review of civil proceedings under family law - believed to number up to 5,000 cases - was being considered.

On Monday it was announced the cases of 258 parents convicted of killing their children would be studied.

Doubt has been cast on evidence given by expert witnesses who suggested the children did not die naturally.

COT DEATHS REVIEW
258 criminal cases identified
54 involve women in prison - top priority
Plus 15 cases awaiting trial - CPS to advise
Plus family cases to be identified


Ms Harman said: "In family cases, what's happening is there's a consideration how to go about a review.

"We will make sure that we recognise that not only injustices done in the criminal justice system but any potential injustices in care proceedings are identified and acted on.

"We bear in mind the absolute, utmost gravity and seriousness of those whose injustice is not in the hands of the criminal justice system but as a result of the family justice system."

Talking about the review as a whole, she told MPs it was a "serious, but not chaotic" situation and a fast-track process would deal with urgent criminal cases.

We had not been interviewed by him. We did not even know who he was
Mother whose daughter was taken into care after evidence by Sir Roy Meadow

She said Attorney General Lord Goldsmith would meet the chairman of the Criminal Cases Review Commission on Friday to discuss the review of infant death cases.

Cases involving people in prison and those which relied on expert evidence will be fast-tracked to appeal or to the review commission.

In a separate development, Director of Public Prosecutions Ken Macdonald QC said he would take personal charge of reviewing 15 cases which have yet to come to trial.

And Home Secretary David Blunkett welcomed the review as a chance to check "what the extent of the problem has been".

The Appeal Court sparked the process on Monday while giving the reasons for its decision last month to clear Wiltshire shop assistant Angela Cannings of murdering her two sons.

The judges said parents should not be prosecuted when it was possible their children had suffered cot death.

A total of 258 parents convicted of killing a child under two years old will have their cases studied.

Death theory

Attorney General Lord Goldsmith, who announced the review, answered questions about it in the Lords on Tuesday.

It is estimated about 5,000 children have been taken from their parents in the past 15 years on the suspicion that an infant has been smothered.

Some of these children were taken as a result of a controversial theory by paediatrician Sir Roy Meadow, which has been questioned by recent criminal cases.

There are some expert witnesses who when they stand up in court bring with them a very strong persuasive element to their evidence
Dr Chris Pamplin
UK Register of Expert Witnesses

His theory of Munchausen's Syndrome by Proxy is that some mothers harm their children to draw attention to themselves.

But in three separate appeal cases last year that involved his evidence, mothers were acquitted of murdering their children and released from prison.

Another parent, who cannot be named for legal reasons, told BBC Radio 4's Today programme her daughter was taken from her at birth because she was suspected of smothering her first baby son.

She called for a review of her case so that her daughter, now aged four, could be returned to her because she was "moved unnecessarily".

Graham Zellick, chairman of the Criminal Cases Review Commission, told Today convictions which had relied solely on disputed medical evidence would be deemed unsafe.

But he said he had no idea how many cases fell into that category.

Dr Chris Pamplin, the editor of the UK Register of Expert Witnesses, said some expert witnesses were adept at persuading a court about the strength of their evidence.

What is your view on this story? Have you been affected by cot death? Add your comments using the form below:

Your comments:

These cases show there is a serious flaw in the so called expert witnesses. Women who had had their children taken away must be suffering. Not all women accused are innocent but a great majority are. How can you they prove cot-deaths when nobody knows what cause them? What about these adult sudden death syndrome, surely this is the same thing?
E Reade, Cardiff, South Glamorgan

I have followed the extraordinary story of Professor Sir Roy Meadow for some time and I'm delighted that the parents whose lives he has ruined will at last get some justice, though the misery they have suffered and the years they have lost can never be compensated.
Ken, London

Maybe if it happened to them they might understand how people feel. It's bad enough having to lose someone who you carried around for 9 months then went thought the pain of labour but to be found guilty of murdering them is unbelievable. Let the parents greave for their baby. Surely by now the doctors can tell the difference between natural causes and murder. I thought we have progressed with medicine from the programme I watched the other week, the doctors still don't have a clue
Lorraine Howarth, Manchester, UK

Parents with children who have ME/CFS have also been subjected to these accusations of Munchausen's Syndrome by Proxy. Some children have had care proceedings taken out against them. They have been made wards of court, removed from their families, subjected to inappropriate treatment and management regimes which have damaged them further, physically and emotionally. Families have no option but to remain silent if served with an injunction. These cases too need to be reviewed.
Barbara Robinson, Ipswich, Suffolk

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/uk/3412307.stm

Published: 2004/01/20 17:37:21 GMT

© BBC MMIV

and:

Accused of abuse, but never tried


Mothers Sally Clark and Trupti Patel found themselves in the dock accused of murdering their babies partly on the strength of expert testimony by Sir Roy Meadows. But other families have been forcibly separated thanks to Sir Roy's testimony without police charges ever being brought.

The jury at Trupti Patel's trial took just 90 minutes on 11 June to discount the prosecution's case that the 35-year-old had caused the deaths of her three baby sons between 1997 and 2001 - an allegation partly based on the expert medical opinion of paediatrician Sir Roy Meadow that three such unexplained deaths in one family was "very unusual".

There was no jury to find in favour of Maxine Carter [not her real name] in 1999 when Sir Roy helped convince a judge at a family court that she had tried to poison her baby daughter. All four of Maxine's children were immediately taken into care - with the youngest two being put up for adoption - even though police never pressed charges for the alleged poisoning.

Never charged

"If someone gave that tablet to my daughter, I want them to be arrested and charged," says Mrs Carter, who found herself facing civil proceedings to wrest her children from her rather than a criminal trial.

Maxine's husband, Will Carter, has a theory why this should be so. "I think they know that if our case went to a criminal court, they'd be found wrong and end up with egg of their faces."

The Carters joined other couples accused of killing or abusing their children who gathered yesterday for a demonstration outside the high court in London to protest against the influence of expert witnesses in deciding such cases.

Many, including the Carters, donned symbolic cloth gags, since they cannot be photographed or publicly named because the family court fears their being identified will impact on the children taken from them and resettled elsewhere.

The Carters' ordeal began when their 16-month-old daughter suffered a stroke and several heart attacks. Six months later, though the girl had recovered, a urine sample dating from her period of sickness tested positive from a drug prescribed to one of the couple's older children.

Decisive testimony

"The little tablets were beige and we had a beige carpet. The baby must have found one - which look a bit like Smarties - and put it in her mouth," says Mr Carter.

Both sides agreed that Sir Roy should be brought in to look at the case.

"We were told he was the top guy, so we thought: 'Great! He'll know what a big cock up this has been,'" says Mr Carter.

Juries are [not] the right people to decide these things as they can be swayed more easily by the mother standing in front of them
Eleanor Platt, QC
However, Sir Roy diagnosed Mrs Carter as suffering Munchausen's Syndrome by Proxy - a condition he first identified, in which mothers harm their children as a way to attract attention to themselves. The judge was told the child had consumed up to 12 tablets - a dose Sir Roy said the baby was unlikely to have taken herself accidental. The Carters say the number of tablets taken is disputed, and could have been just one.

"It was my word against his. Who is the judge going to believe, a parent or a health professional?" says Mrs Carter.

Karen and Mark Haynes [not their real names] also say Sir Roy's testimony to a family court swung the judgement against their plea that Mrs Haynes had not smothered to death her baby son and that the couple's newborn child should not be taken into care.

"Meadow was the most convincing of the witnesses in court, perhaps because he has had so much practice. Though other experts said our baby had not been killed, the judge believed him," says Mr Haynes.

Are juries better?

A leading barrister says family court proceedings are far better at weighing complex medical evidence than the criminal court Trupti Patel faced.

Eleanor Platt, QC - who sits in the family court and is president of the Medico-Legal Society - says she does not think "juries are the right people to decide these things as they can be swayed more easily by the mother standing in front of them".

She says that judges sitting on civil family courts are there to ensure the welfare of children, and not to prosecute the parent - a role for the Crown Prosecution Service and the criminal courts.

"Being a civil court there is a different standard of proof," says Mrs Platt. Where juries must belief a guilt "beyond reasonable doubt", family court judges must consider the "balance of probabilities".

While the unexplained deaths of infants are rare, family court judges are experienced in hearing medical testimony on abuse cases and seek the widest spectrum of opinion to help decide what care is best for a child, she says. In the case of the Carters and the Haynes, this meant the judges took note of Sir Roy's opinions.

The criminal cases of Trupti Patel and Sally Clark (who was wrongly imprisoned for three years for murder after cot death claimed her two sons) has brought Sir Roy's decisive testimony into question, but so far only the evidence he gave in criminal proceedings is to be re-examined. This will not help reunite the Carters or the Haynes with their children.

"We need to change the family court system," says Mr Haynes - whose daughter was taken into care just 25 minutes after being born. "We've lost one son to sudden infant death syndrome and we are destined to remain childless for the rest of our lives unless we speak out against this injustice."
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/uk/3032336.stm

Published: 2003/07/01 10:37:50 GMT

© BBC MMIV

Emps

 

[TheQuixote]

In some ways it stirkes me more something along the lines of Satanic Ritual Abuse or witch trials and certainly impinges on unquestionably relying on 'experts' (as an earlier incident where a forensic scientists work was shown to be fundamentall flaed and a huge number of cases had to be reviewed).

I'd certainly agree with this. There could also be the possibility that some people were able to *gain* from misusing Meadow's Law and other associated theories against families. I believe that there will be an awful lot more to come out in the wash after all the cases are reviewed.

Most repeat cot deaths 'natural'

The overwhelming majority of repeat cot deaths are from natural causes, a study says.

Researchers found eight in 10 sudden infant deaths in families who had already had a baby die unexpectedly were not suspicious.

The joint University of Sheffield and London School of Hygiene and Tropical Medicine team studied 6,373 babies.

Some 46 children died unexpectedly - 40 from natural causes and six from probable homicide, the report said.

It shows that any form of automatic suspicion such as the so-called Meadow's Law is unjustified
Joyce Epstein

Researchers said the findings, published in The Lancet medical journal, challenged suggestions that two or three unexpected deaths in the same family were more likely to be unnatural.

Report co-author Professor Robert Carpenter said: "Although child abuse is not uncommon, from the best available data, we believe that the occurrence of a second or third sudden unexpected death in infancy within a family, although relatively rare, is in most cases from natural causes."

Sudden infant deaths have fallen dramatically over the last 20 years from 1,700 a year in the mid 1980s to 175 in 2003.

Joyce Epstein, director of the Foundation for the Study of Infant Deaths, which funded the Care of the Next Infant programme on which the study was based, said it was an important piece of work.

"The study found that a second death is much more likely to be due to natural than unnatural causes.

'Preconceived notions'

"It shows that any form of automatic suspicion such as the so-called Meadow's Law is unjustified.

"This unique research shows how important it is to examine each infant death thoroughly and fairly and not leap to conclusions based on preconceived notions."

Meadow's Law refers to an observation in a book by the now-discredited paediatrician Professor Roy Meadow which stated: "One sudden infant death is a tragedy, two is suspicious and three is murder, unless proven otherwise."

Professor Meadow gave evidence in the case of Angela Cannings who was cleared on appeal a year ago of murdering her two baby sons.

Her case prompted the Attorney General to set up a review of sudden infant death convictions.

He has subsequently ordered the cases of 28 parents convicted of killing their children to be investigated further.



Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/h ... 132643.stm
Published: 2004/12/31 02:53:57 GMT

© BBC MMV

 

[Anonymous]

I've always wondered if it implied that that there may be some genetic factor involved. If you have a high number of deaths due to heart attacks in the family, the assumption is usually made that you have a genetic predisposition to heart disease, not that someone in your immediate family is bumping them off.

 

[TheQuixote]

The gene discovery also has implications for the validity for some accusations and convictions due to Shaken Baby Syndrome (SBS). Although SBS does occur, http://www.dontshake.com, it has been noted that in some cases for example Louise Woodward's, a genetic flaw may have been the cause of the child's death.

[...]

A very important aspect of this article is that the specific cases cited (Clark, Patel, Cannings) included accusations by Meadow of "Shaken Baby Syndrome." This "junk science" diagnosis continues to be assigned promiscuously by medical "experts" (pediatricians, medical examiners, nurses, psychiatrists, and others) in the United States.

It is no exaggeration to suggest that we are suffering from an epidemic of these cases. Parents, most often fathers, are being indicted on murder charges and a significant number have already been convicted and sentenced to lengthy jail terms and even life in prison.

In a Pennsylvania case on which I have consulted, the prosecutor has announced that he will seek the death penalty. The accused father has no criminal record, no history of substance abuse or violence, no psychiatric impairments, and many friends and relatives who state unequivocally that he adored his baby son. There is absolutely no evidence whatsoever to suggest that he is culpable other than the fact that he was the sole parent present when the child was stricken and eventually died.

[...]

http://www.injusticebusters.com/04/Meadow_RoyUK.htm

Doubt over shaken baby diagnosis
http://news.bbc.co.uk/2/hi/health/3564605.stm

http://www.nmc-uk.org/nmc/main/news/sha ... drome.html

~

Apologies for the length of the quotes. This outlines some aspects of the criteria that was used to gain convictions against parents. It also outlines the type of research that Meadows carried out.

In his paper "Mothering to Death" in Arch Dis Child 1999; 80: 359-362 (April) he writes entirely of his own work - no one else is involved. The names are anonymous - how do we check for accuracy? The first four references given to back up his paper are from (1) Meadow, (2) Meadow, (3) Meadow, (4) Meadow. Altogether five of the people who agree with him are named Meadow. Is this science?

[...]

An article by Meadow - "Unnatural sudden infant death" (Arch Dis Child 1999;80:7-14 (January) - describes 81 UK cases in which children were judged by criminal and family courts to have been killed by their parents. The cases were from the previous 18 years; a small number were from Meadow's locality; in the others he was involved at the request of medical colleagues, social services, or the police. The judgements, he says, were based on "a high degree of probability" (not on certainty). Before Meadow became involved, each of these deaths was regarded as being from natural causes. ?

"The reason that more than half the reported families included more than one dead child is likely to be because the courts were impressed by evidence that it was highly improbable for two or more children to die in infancy of undiagnosable natural causes: 'if there is a 1/1,000 chance of a child dying suddenly and unexpectedly of natural causes in the first year of life, the chance of two children within a family so dying is 1/1,000,000.' A parent who kills only one child is much less likely to be incriminated than one who kills or abuses two or more. Nevertheless, the findings of 26 serial killers is worrying." ?

[...]

"In the recent highly-publicised case of R v. Sally Clark, a medical expert witness [Meadow] drew on published studies to obtain a figure for the frequency of sudden infant death syndrome (SIDS, or 'cot death') in families having some of the characteristics of the defendant's family. He went on to square this figure to obtain a value of 1 in 73 million for the frequency of two cases of SIDS in such a family.

"This approach is, in general, statistically invalid. It would only be valid if SIDS cases arose independently within families, an assumption that would need to be justified empirically. Not only was no such empirical justification provided in the case, but also there are very strong a priori reasons for supposing that the assumption will be false. There may well be unknown genetic or environmental factors that predispose families to SIDS, so that a second case within the family becomes much more likely.

"The well-publicised figure of 1 in 73 million thus has no statistical basis. Its use cannot reasonably be justified as a 'ballpark' figure because the error involved is likely to be very large, and in one particular direction. The true frequency of families with two cases of SIDS may be very much less incriminating than the figure presented to the jury at trial.

"Aside from its invalidity, figures such as the 1 in 73 million are very easily misinterpreted. Some press reports at the time stated that this was the chance that the deaths of Sally Clark's two children were accidental. This (mis-)interpretation is a serious error of logic known as the Prosecutor's Fallacy. The jury needs to weigh up two competing explanations for the babies' deaths: SIDS or murder. Two deaths by SIDS or two murders are each quite unlikely, but one has apparently happened in this case. What matters is the relative likelihood of the deaths under each explanation, not just how unlikely they are under one explanation (in this case SIDS, according to the evidence as presented).

"There is a real possibility that without proper guidance, and well-informed presentation, frequency estimates presented in court could be misinterpreted by the jury in ways that are very prejudicial to defendants.

"Society does not tolerate doctors making serious clinical errors because it is widely understood that such errors could mean the difference between life and death. The case of R v. Sally Clark is one example of a medical expert witness making a serious statistical error, one which may have had a profound effect on the outcome of the case. [The inference is that Prof. Meadow should not be tolerated.]

"The chance of a parent finding a child dying a natural death a few seconds before stopping breathing is very small," Meadow wrote. If this isn't nonsense, it's absurd. Apnoea monitors are offered to parents who have lost a child, in the hope that if a second child is near to breathing stoppage, they might hear the alarm and rush in to prevent death.

In some of the 81 cases there was admission of guilt, but this is far from being certainty: a parent, in extreme distress following loss of a child, is subjected to prolonged interrogation, never before having been in police hands. There will inevitably be self-questioning: "What did I do wrong? How could I have prevented this?" And then the offer: admit guilt and you'll likely get probation; deny it and you'll be jailed for life."

[...]

As the result of a BMJ article and subsequent letters, plus television and radio documentaries and newspaper articles, it is now common knowledge that he oversteps the mark - e.g. on statistics such as "a cot death in an affluent family is at odds of one in 8,500 therefore two deaths must involve odds of one in 73 million and will occur only once in a hundred years." Or (in securing murder convictions against several other less-affluent mothers, "two deaths involve odds of one in a million."

There are patently double cot deaths every 18 months in Britain, and so the good paediatrician must be convinced that 55 out of every 56 such double tragedies are actually murder. Worst, still, he has such prestige that when he chooses to give "expert" evidence there is almost inevitably a conviction, followed by dismissal of appeal.

Recently, in Birmingham, Meadow gave the opinion that a child's death was "probably murder." Police had investigated and saw no reason to doubt that the death was natural - and yet on this vague opinion alone, Social Services took away the couple's second child hours after birth, and it is now well into the stage of adoption - with the blessing of a family court judge. There has been no criminal trial. Meadow's opinion of "probability" is sufficient. ?
[...]

http://www.portia.org/chapter11/thisisit.html

The above highlighted paragraph goes to show just how influencial his theories were with authorities. Many parents who are now vindicated will not have their children returned to them. I know of a case where children were taken illegally and given up for adoption without their parents consent and while they were still fighting their case against a local authority. Court action has acknowledged this injustice, yet under law, once a child has been adopted they cannot be returned to their natural parents.

Melissa Kite, Deputy Political Editor, Sunday Telegraph (London), January 18, 2004

Thousands of parents who had children taken away from them on the evidence of the controversial paediatrician Professor Sir Roy Meadow will not have them returned.

Ministers are to review as many as 5,000 civil cases of families affected over the past 15 years by Prof Meadow's now-discredited theory of Munchausen Syndrome By Proxy. This accused mothers of harming their children to draw attention to themselves.

Many mothers say that they have been vindicated in their insistence that they were wrongly accused and now want their children back. However, Margaret Hodge, the minister for children, has ruled out any widespread return.
[...]
http://www.injusticebusters.com/04/Meadow_RoyUK.htm

[...]

"Gene find casts doubt on double 'cot death' murders." This was the headline for an "Observer" article on July 15, 2000, which was co-ordinated with a BBC Radio 5 documentary attacking convictions obtained by Meadow. (He was asked to respond but declined to do so.) However, the newly discovered gene does more than the headline claims. Miss Louise Woodward, Mrs Helen Stacey and Mrs Manjit Basuta (among others) were convicted of murdering an infant in their care. . . . But in all three cases there is evidence of genetic flaws and the deaths were "probably natural."

Mrs Marie Noe, of Philadelphia, who suffered the inexplicable loss of seven children, and was described in a newspaper headline as a "Momstrosity" most probably did nothing whatever to bring about their deaths. In his book "ABC of child abuse," Meadow wrote: "One sudden infant death is a tragedy, two is suspicious and three is murder until proved otherwise." (This was the aphorism used by coroner Halbert Fillinger at the trial of Mrs Noe.) But then Meadow took it further: two deaths were no longer "suspicious," but involve odds of one-in-a-million or one-in-73 million according to affluence. A single death is "probably murder."

Meadow has given successful evidence for the prosecution in criminal trials and family courts around the world and now, like Icarius, becoming egotistically confident of his own infallibility, overreach has (I hope) brought downfall.

In every "murder trial" in which he has been involved there is high probability that death was natural, perhaps due to genetic mutation. And - for genetic research is still in its infancy - there may be many mutations that kill children.

The Radio 5 documentary ended with advice for the Home Secretary: every conviction resulting from death of a child without substantial evidence of abuse should be reconsidered, from the viewpoint, "one child death is a tragedy, two is a tragedy, three is a tragedy."

John Sweeney and Bill Law wrote in the "Observer" that the damning evidence against Mrs Sally Clark was the inexpert evidence of Professor Meadow that there was "only one chance in 73 million" that the deaths of her two babies were anything but murder. This was described as a "crude aphorism by a knighted professor, a superb performer in the witness box."

John Batt, a solicitor who has known Mrs Clark since childhood, and was astonishingly successful in preventing her name being struck off the list of lawyers, said the trial jury's reaction may have been that if she could prove her two children died naturally, they would let her off, "but if she can't she must be guilty." However, he added, there is no way known to science that can prove she did not shake or smother the infants.

"No-one" [writes the "Observer"] is suggesting mothers never kill their babies. But Meadow's Law risks tarring all mothers who have suffered multiple cot deaths [or single ones] as murderers. It presumes guilt, and the presumption kicks in at the moment a second cot death occurs [or before] - when an innocent mother would be going through unendurable pain.

"Not a single statistician we have contacted has said that 'one in 73 million' - and the way in which Meadow used it - is defensible.

"Peter Donnelly, professor of statistical science at Oxford University, is scathing: 'It is poor science, it's not rigorous, it's just wrong.'

"In February Manchester University announced: 'Cot death gene identified.' Scientists looked at the DNA of 23 babies who had died from cot death or sudden infant death syndrome (SIDS) and compared it with the genetic make-up of normal babies. Babies with three particular genetic differences were three times more likely to die from SIDS. The genes 'switched on and off' the immune system. One gene was particularly important.

http://www.portia.org/chapter11/thisisit.html

 

[jandzmom]

Seizures in sleep can cause death

Yikes.

We had an experience with our son who has disabilities -- he had his first epileptic seizure at night in his sleep when he was 7. Hubby just happened to get up to use the bathroom in the middle of the night, and walked past son's room and saw him laying half on/half off his bed, husband picked him up to tuck him in, and found him in advanced seizure.

We took son to hospital, and from his blood gases they could tell that he'd been seizing for about 2.5 hours -- and that he was minutes from death. He remained in a coma for 2 days afterwards. The seizure acted like a stroke, and he had partial paralysis when he woke up.

If hubby hadn't found our dear son at the time he did, we would have woken up to find our sweet boy dead. I wonder how many people haven't been so lucky.

JandZmom

 

[OldTimeRadio]

Thank God you were in time.

 

[jandzmom]

Thank God you were in time.

Yep.

While we're so grateful that our dear boy is as fine as he can be, husband is haunted by the thought of what might have happened.

Hubby and I still sleep in shifts, so that we can check on our son every two hours.

But in the end, we've had to come to terms with the possibility that we may wake up one morning to find him gone. I think the difference between us and the folks with SADS is that they aren't expecting that shoe to drop.

JandZmom

 

[OldTimeRadio]

Isn't there any type of electronic room monitoring available which would trigger a loud alarm in your bedroom during a state of emergency?

 

[jandzmom]

I know that some children (including a nephew who has heart problems) do quite well with night time monitoring devices. Our son didn't do very well with the standard monitor with leads -- he kept ripping the leads off. We did borrow something that was like a little jacket but he didn't do well with that -- and it was super sensitive, going off all the time. Scared us to death.

So he slept with us for a bit, then we let him back into his own bed. Now we just check on him every two hours. And we nap when we can.

Carry on, right? That's all one can do.

JandZmom

 

[EnolaGaia]

I've always wondered if it implied that that there may be some genetic factor involved. If you have a high number of deaths due to heart attacks in the family, the assumption is usually made that you have a genetic predisposition to heart disease, not that someone in your immediate family is bumping them off. ...

According to this new ScienceAlert article, researchers are finally beginning to pinpoint genetic factors that may well explain the underlying causes of SIDS / SUDC incidents.

Some Children Die Without Explanation. Genetics Is Finally Giving Us Answers

Each year in the United States, hundreds of children die for undetermined reasons, usually in their sleep or while resting. Due to the way deaths are investigated and certified, it's hard to say how often this occurs. By some estimates, several hundred children aged between 1 and 18 die suddenly from unexplained causes each year.

When the child is younger than 12 months, it's known as sudden infant death syndrome (SIDS). According to the CDC, 1,250 such deaths qualified in 2019 – roughly three times the number of sudden unexplained deaths in children (SUDC).

SIDS causes three times as many deaths as SUDC, yet receives 20 times the amount of research funding.

Laura Gould has been working for decades to change that. After losing her 15-month-year old in 1997, she co-founded the SUDC Registry and Research Collaborative (SUDCRRC) with a neurologist from New York University.

Using [a] database to compare 124 molecular autopsy results with genetic data from the parents, researchers have now revealed a potential cause for some instances of SUDC.

In nearly a dozen cases, researchers identified eight gene variants linked to epilepsy, heart arrhythmias, and neurodevelopmental disorders.

Six of the gene variants are known to be involved in calcium signaling, which is what allows the heart muscle to contract and neurons to fire off messages.

In most cases, the parents of the deceased children did not show the same mutations, which means they were not passed down but randomly derived. ...

"Our study is the largest of its kind to date, the first to prove that there are definite genetic causes of SUDC, and the first to fill in any portion of the risk picture," says neuroscientist Richard Tsien from NYU. ...

The study looked specifically for 137 genetic variants that are linked to cardiac and epilepsy issues, as this seems to be what causes most cases of SUDC.

Compared to the general population, these variants were ten times more likely to show up among cases of SUDC. ...

The genetic variants identified in the current study were only found in 9 percent of the cohort; more work will need to be done to figure out what causes the majority of SUDC cases.

A second study, conducted by the same team of researchers, dug into the data further. This time, they were looking for 294 potentially deadly genetic variants in 352 SUDC cases.

Among a subset of 73 cases, where parental data were also available, the authors found 37 gene variants that are likely related to neurological, cardiac, or systemic diseases.

The researchers note that the presence of pathogenic gene variants "does not in itself establish causality", but their findings are a highly promising start for not only providing better diagnosis and peace of mind for bereaved parents ...

FULL STORY: https://www.sciencealert.com/some-c...on-genetics-is-finally-giving-us-some-answers

 

[EnolaGaia]

Here are the bibliographic details and abstract for the research report on the first study cited above. The full report is accessible at the link below.

---

De novo mutations in childhood cases of sudden unexplained death that disrupt intracellular Ca2+ regulation
Matthew Halvorsen, Laura Gould, Xiaohan Wang, Gariel Grant, Raquel Moya, Rachel Rabin, Michael J. Ackerman, David J. Tester, Peter T. Lin, John G. Pappas, Matthew T. Maurano, David B. Goldstein, Richard W. Tsien, Orrin Devinsky
Proceedings of the National Academy of Sciences Dec 2021, 118 (52) e2115140118
DOI: 10.1073/pnas.2115140118

Abstract
Sudden unexplained death in childhood (SUDC) is an understudied problem. Whole-exome sequence data from 124 “trios” (decedent child, living parents) was used to test for excessive de novo mutations (DNMs) in genes involved in cardiac arrhythmias, epilepsy, and other disorders. Among decedents, nonsynonymous DNMs were enriched in genes associated with cardiac and seizure disorders relative to controls (odds ratio = 9.76, P = 2.15 × 10−4). We also found evidence for overtransmission of loss-of-function (LoF) or previously reported pathogenic variants in these same genes from heterozygous carrier parents (11 of 14 transmitted, P = 0.03). We identified a total of 11 SUDC proband genotypes (7 de novo, 1 transmitted parental mosaic, 2 transmitted parental heterozygous, and 1 compound heterozygous) as pathogenic and likely contributory to death, a genetic finding in 8.9% of our cohort. Two genes had recurrent missense DNMs, RYR2 and CACNA1C. Both RYR2 mutations are pathogenic (P = 1.7 × 10−7) and were previously studied in mouse models. Both CACNA1C mutations lie within a 104-nt exon (P = 1.0 × 10−7) and result in slowed L-type calcium channel inactivation and lower current density. In total, six pathogenic DNMs can alter calcium-related regulation of cardiomyocyte and neuronal excitability at a submembrane junction, suggesting a pathway conferring susceptibility to sudden death. There was a trend for excess LoF mutations in LoF intolerant genes, where ≥1 nonhealthy sample in denovo-db has a similar variant (odds ratio = 6.73, P = 0.02); additional uncharacterized genetic causes of sudden death in children might be discovered with larger cohorts.

SOURCE / FULL REPORT: https://www.pnas.org/content/118/52/e2115140118

 

[EnolaGaia]

Here are the bibliographic details and abstract for the research report on the second study cited above. The full report is accessible at the link below.

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Genetic Determinants of Sudden Unexpected Death in Pediatrics
Hyun Yong Koh, Alireza Haghighi, Christine Keywan, Ingrid A. Holm, Annapurna H. Poduri, Richard D. Goldstein
Genetics in Medicine
Open Access Published: January 10, 2022
DOI:https://doi.org/10.1016/j.gim.2021.12.004

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Abstract

Purpose
This study aimed to evaluate genetic contributions to sudden unexpected death in pediatrics (SUDP).

Methods
We phenotyped and performed exome sequencing for 352 SUDP cases. We analyzed variants in 294 "SUDP genes" with mechanisms plausibly related to sudden death. In a subset of 73 cases with parental data (trios), we performed exome-wide analyses and conducted cohort-wide burden analyses.

Results
In total, we identified likely contributory variants in 37 of 352 probands (11%). Analysis of SUDP genes identified pathogenic/likely pathogenic variants in 12 of 352 cases (SCN1A, DEPDC5 [2], GABRG2, SCN5A [2], TTN [2], MYBPC3, PLN, TNNI3, and PDHA1) and variants of unknown significance–favor-pathogenic in 17 of 352 cases. Exome-wide analyses of the 73 cases with family data additionally identified 4 de novo pathogenic/likely pathogenic variants (SCN1A [2], ANKRD1, and BRPF1) and 4 de novo variants of unknown significance–favor-pathogenic. Comparing cases with controls, we demonstrated an excess burden of rare damaging SUDP gene variants (odds ratio, 2.94; 95% confidence interval, 2.37-4.21) and of exome-wide de novo variants in the subset of 73 with trio data (odds ratio, 3.13; 95% confidence interval, 1.91-5.16).

Conclusion
We provide strong evidence for a role of genetic factors in SUDP, involving both candidate genes and novel genes for SUDP and expanding phenotypes of disease genes not previously associated with sudden death.

SOURCE / FULL REPORT: https://www.gimjournal.org/article/S1098-3600(21)05423-X/fulltext