J u l e e
Drama Llama
Posts: 6,531
Location: Cincinnati
Jun 28, 2014 2:50:47 GMT
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Post by J u l e e on May 13, 2022 16:42:48 GMT
This is such amazing news! A co-worker of mine lost her infant son to SIDS and her husband was so convinced she did something that he divorced her. I cannot imagine the grief of losing your child and your marriage at the same time. I admire how the scientist was determined to find the answer to this mystery and keep at it for nearly three decades. I hope she still knows how to contact him. I’d be forwarding this article with a big FU in the subject line (although I’m certain she’s realized she’s better off without him).
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Post by littlemama on May 13, 2022 17:27:53 GMT
Not disputing that, but can you imagine the anxiety for parents who know their child lacks the enzyme and there is nothing else they can do? I would imagine that they would also research the possibility of a manufactured replacement to cover the lack of the enzyme in the body now they have an idea of what is missing. I am not disagreeing that this is an incredible advancement and should be reported, I am just thinking of the timeframe between now and when there is a solution. I dont know if it would be better or worse to know in advance that your baby lacked the enzyme if there wasn't anything thst could be done about it. As an anxious first time mom, I think Id spend a lot of time obsessing and worrying about it.
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Deleted
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Oct 7, 2024 3:26:13 GMT
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Post by Deleted on May 13, 2022 17:30:56 GMT
Amazing. Hopefully babies with this can get more monitoring devices so the parents can sleep sometimes. I wonder how many babies with the problem develop normally...my coworker just delivered after losing her second child to SIDS she is so brave to move forward.
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Deleted
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Oct 7, 2024 3:26:13 GMT
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Post by Deleted on May 13, 2022 17:36:06 GMT
Am I the only one worried about who will be covered once treatment is found?
Dd was being evaluated for a specific enzyme condition that would require infusions. The cost was outrageous and there would have been a big fight to get it. It also came with a heavy list of bad side effects.
You all know the fight I have had (7 times) to keep her IgG infusions going.
I hope who ever finds treatment doesn't make it cost thousands of dollars. And that the government mandates coverage for all. No matter who you are or what you make or where you live. As well as ease of access to treatment- in home or at a center with free travel for those who can't get there.
There is a lot of red tape for needed treatments for conditions that can be managed easily with treatment.
If you don't have the time and money to fight...you are out of luck.
And no one should have to suffer because if that.
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Post by bc2ca on May 13, 2022 17:47:03 GMT
That whole story is amazing - finding the enzyme and the fact that it was a mom scientist who had lost a child to SIDS. She’s amazing. I don’t know her, never heard of her and I’m so proud of her. all the above. What a way to honor her DD and keep her memory alive. I'm in tears right now. We know two families that lost a child to SIDS 30 years ago. One was a friend of DH's and they had gone on to have 2 more babies by the time I met them so I'd never knew their son. The other was a friend/co-worker and I'll never forget the call. I'd snuggled with her baby. She'd just returned from an extended trip to Europe to visit her family and had to keep it together to care for her almost 2 year old.
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Post by iamkristinl16 on May 13, 2022 17:59:07 GMT
If they do develop a screening for this enzyme I hope it doesn’t give parents a false sense of security to then add crib bumpers, mesh panels, blankets, pillows, stuffed animals, bottles, or even bed share with their infant if they “pass” the test. I fear it will lead to parents being lax about safe sleep guidelines because they passed the screening. I was thinking this as well.
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Deleted
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Oct 7, 2024 3:26:13 GMT
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Post by Deleted on May 13, 2022 18:02:16 GMT
Am I the only one worried about who will be covered once treatment is found? Dd was being evaluated for a specific enzyme condition that would require infusions. The cost was outrageous and there would have been a big fight to get it. It also came with a heavy list of bad side effects. You all know the fight I have had (7 times) to keep her IgG infusions going. I hope who ever finds treatment doesn't make it cost thousands of dollars. And that the government mandates coverage for all. No matter who you are or what you make or where you live. As well as ease of access to treatment- in home or at a center with free travel for those who can't get there. There is a lot of red tape for needed treatments for conditions that can be managed easily with treatment. If you don't have the time and money to fight...you are out of luck. And no one should have to suffer because if that. Fortunately for others this doesn't happen in a lot of other countries and it won't happen in Australia where the breakthrough came from either. It's very sad that you and others in the same position have to go through so many hoops and costs associated with healthcare in the US.
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Post by snugglebutter on May 13, 2022 21:16:47 GMT
Well, you have to know what the problem is to determine how to prevent it. This is a huge step in the direction. Not disputing that, but can you imagine the anxiety for parents who know their child lacks the enzyme and there is nothing else they can do?
I hope these parents will be able to get medical-grade monitoring. I know that some parents who have lost babies to SIDS have used them for subsequent babies.
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Post by Merge on May 13, 2022 21:50:49 GMT
A close friend from our toddler playgroup lost her youngest to SIDS at almost two years old - we were all shocked (besides being devastated) because you always hear about it with newborns, not toddlers.
I imagine this news will be bittersweet for her and anyone else who has lost a child this way.
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Post by Megan on May 13, 2022 22:56:11 GMT
I don't want to be a Debbie Downer (but here I am!) - I think it's important to realize "the" cause for SIDS hasn't been found. It will be interesting to see how things progress.
This article has been a huge point of conversation in a group I follow that focuses on evidence-based sleep and baby care (https://www.facebook.com/groups/safesleepbabycare). This study might show some promise, but there are some conceptual problems. I'm going to paste a lot of info thoughtfully put together by one of the researchers in the group...
"First, the sample size is quite small, and there are a lot of places where subjects get excluded. Only 98 SUIDs (sudden unexpected infant death) were identified. Of those, 31, nearly a third, could not be matched with a blood sample. 6 SUIDs were excluded based on low signal in the assay results, and 5 due to a problem with the assay, leaving just 26 SIDS cases and 30 non-SIDS cases. There are many controls, but there is only so much you can get with so few subjects. Next, it is not as clear as we’d like what the “SIDS” group actually represents. The diagnosis was limited to the forensic pathologist’s final decision on whether the cause of death was known or unknown. They did NOT actually look into the autopsy reports. This is really important, because it means that we cannot know whether the “SIDS” cases were pure SIDS with no other environmental risk factors, or deaths with unknown causes but with risk factors present. That means that, for example, a baby found in an adult bed or with a blanket, but without clear suffocation as cause of death, will be in the same group as a baby in a true safe sleep space. SIDS without risk factors is extremely rare, and it is unlikely that a sufficient number of true SIDS without environmental risks were in this cohort. That is a serious problem for a study that is trying to find the risks in those true, pure SIDS cases, factors that are most likely dwarfed by effects from known unsafe sleep risk factors. Thinking back to the Triple Risk Model, the study tries to identify vulnerabilities, but fails to isolate them from environmental risk factors. And speaking of vulnerabilities, we come to another serious issue with the cohort design. The analysis hinges on the question of whether babies in the SIDS group differ from the cohort of living controls MORE than the non-SIDS group differs from their own, separate set of living controls. However, we know already that there are also risk factors (vulnerabilities) that are associated with SIDS. These include things like prematurity, race, second hand or in utero smoke exposure, and lack of prenatal care. The living controls are matched for sex (another risk factor—male babies are at higher risk than female babies), but no other factors. As a hypothetical to see how this could be a problem, take the example of prematurity. Imagine the case that premature babies have lower BAchE activity, but that the risk of SIDS in premature babies is actually conferred by some other part of the complex physiology of prematurity. Now imagine that, because the SUID cases were matched only by sex and birth date, there is a higher proportion of premature babies in the SIDS cohort than any other group (BECAUSE prematurity is a risk for SIDS—see how it is circular?) You could get results very much like this, even without BChE playing any role in SIDS, because in actuality, another factor, prematurity, causes both the lower BChE and the higher risk of SIDS. The possibilities cannot be distinguished without accounting for other risk factors.
* There is also a problem with how the study is being interpreted in lay audiences. I started looking at this paper because it is getting quite a bit of attention in online parenting groups like this one. Some of those groups are talking about this like it is a major breakthrough in the prevention of SIDS, and taking it to mean that SIDS is simply inevitable for babies with this difference. Even the idea that this is mechanistically related to SIDS is still questionable. Only blood activity of the enzyme was measured, and it is brain activity that is most relevant. The two don’t always match. But, regardless, if you take ANYTHING at all from this, I hope it is the following: This study does not change the model of SIDS, and does not change the field’s interpretation of the known risk factors. If this pathway is genuinely connected with true, unpreventable SIDS, it reflects the causes in a subset of a tiny subset. Whether it is connected or not, there are much bigger risks, and protective measures to be taken, for all babies. Part 3 of the Triple Risk Model, environmental risks, are a necessary aspect of SIDS.
Following the ABCs of safe sleep is still the absolute best thing you can do to protect your baby from SIDS."
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Post by dewryce on May 13, 2022 23:02:43 GMT
This is such exciting news, can’t wait to share it with my family!
My almost 40 year old brother should have died from SIDS. But our babysitter Bette was an RN who made check on all the kids every 15 minutes. She noticed he wasn’t breathing and his lips were blue and performed CPR and mouth-to-mouth for quite a while. We know we are the very lucky ones.
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Post by Lexica on May 13, 2022 23:33:10 GMT
This is fantastic news! I hope every single parent who has lost a child to SIDS is made aware of this study and can rest in the realization that it was NOT THEIR FAULT! I knew a family that lost their baby to SIDS. It just destroyed them. They didn't divorce and went on to have another child, but I bet they didn't sleep easy throughout that baby's first year of life.
I was pregnant at the time it occurred and I remember laying down to go to sleep that first night and thinking that this was as confident as I would every be that my baby was well cared for by my body. Once he was on the outside, so many things could go wrong. I kept his bassinet beside my bed for the longest time, sleeping with one hand on him to feel him breathing. I know that was overboard, but I just couldn't sleep without doing it. Now with all the cameras you can purchase, I could have at least monitored him in his own room.
When an older child dies in their sleep with no obvious medical reasons for it, my first thought is sleep apnea. I have no idea if that has anything to do it it, but it is just the only thing I know of that can kill you in your sleep. With apnea, you just stop breathing and if it goes on long enough, your brain is so deprived of oxygen that you die. If you are lucky, that is. I say that because I know of a man that had diagnosed apnea but found his equipment irritating and didn't always use it. He had a severe spell during the night and eventually went into seizures from lack of oxygen. The movement woke his wife and she called for an ambulance after getting him to resume breathing. Unfortunately he survived and will live out the remainder of his life in a facility, basically brain dead. I have apnea myself and hearing about that man made me so aware that I absolutely cannot go to bed without putting my breathing tube on. And I have a habit of checking to make sure it is still in place every single time I wake a bit to change sleeping positions. I live alone, so there is no one to wake me unless my dog can tell something is wrong and jumps on me.
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Post by ~summer~ on May 13, 2022 23:44:25 GMT
When the child is over one it is Sudden Unexplained Death in Children (SUDC). Unfortunately I know bc my friend lost her 2 yo to it. Our town does a SUDC fundraising run every year which she organizes.
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Post by AussieMeg on May 14, 2022 0:08:31 GMT
Am I the only one worried about who will be covered once treatment is found? I'm very thankful to live somewhere where that thought honestly didn't cross my mind. Well, you have to know what the problem is to determine how to prevent it. This is a huge step in the direction. Not disputing that, but can you imagine the anxiety for parents who know their child lacks the enzyme and there is nothing else they can do? There are monitoring devices that people are already using, so it's not like there is nothing they can do. But I get your point - it would cause so much anxiety knowing your baby was at a higher risk. I have to ask though - would you prefer not to know that your baby lacks this enzyme, and therefore not put potentially life saving measures in place? Or would you prefer to know so that you CAN put more measures such as sleep monitors in place?
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Post by littlemama on May 14, 2022 1:18:39 GMT
Am I the only one worried about who will be covered once treatment is found? I'm very thankful to live somewhere where that thought honestly didn't cross my mind. Not disputing that, but can you imagine the anxiety for parents who know their child lacks the enzyme and there is nothing else they can do? There are monitoring devices that people are already using, so it's not like there is nothing they can do. But I get your point - it would cause so much anxiety knowing your baby was at a higher risk. I have to ask though - would you prefer not to know that your baby lacks this enzyme, and therefore not put potentially life saving measures in place? Or would you prefer to know so that you CAN put more measures such as sleep monitors in place? If there are monitors, Id rather know that I needed to use one. (My ds is 24, so I dont think there were monitors back then!)
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Post by mikklynn on May 14, 2022 1:26:32 GMT
I always pray for answers to SIDS. I'll never, ever forget my mother finding my baby brother who died from SIDS.
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Deleted
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Oct 7, 2024 3:26:13 GMT
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Post by Deleted on May 14, 2022 11:23:46 GMT
I would imagine that they would also research the possibility of a manufactured replacement to cover the lack of the enzyme in the body now they have an idea of what is missing. I am not disagreeing that this is an incredible advancement and should be reported, I am just thinking of the timeframe between now and when there is a solution. I dont know if it would be better or worse to know in advance that your baby lacked the enzyme if there wasn't anything thst could be done about it. As an anxious first time mom, I think Id spend a lot of time obsessing and worrying about it. With respect you're looking far to deeply into it. At the moment it's one of the things the researches have come up with that could possibly be a cause that contributes to SIDS. It's a bigger advancement than many of the other possible causes that have been found over the years that may contribute to why it happens. Non of the other factors found are totally proved to be preventative either. Many mothers follow the guidance to the letter and still face the heartbreak of SIDS. This latest development if a bigger step forward as it's a "biological" based advancement whereas the variety of possible causes so far is based more on social and environment research which really only lowers the risk. Many mothers have followed the advice we know of to date to the letter, yet some are still faced with the heartbreak of SIDS. It's a first breakthrough biological step at the moment and as with all research it has a long way to go but it's a start and a very important breakthrough. I don't think many would view it as a cure. Certainly until further research is carried out. To me it's no different to cancer. Breakthrough's in cancer research happens every day but the advancement they make is still not a cure. They are possibly contributing factors that need further research. This is no different. Enzyme replacement therapy is already out there for other illnesses/intolerances so the ability to manufacture replacements would be quicker if this was proved to be the cause.
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scrappinwithoutpeas
Pearl Clutcher
Posts: 2,998
Location: Northern Virginia
Aug 7, 2014 22:09:44 GMT
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Post by scrappinwithoutpeas on May 14, 2022 17:46:14 GMT
This is such good news and the first step in getting a solution for prevention. I hope it brings some measure of comfort to those who lost a child to SIDS. Friends of ours lost an infant to SIDS 25+ years ago. It was devastating.
ETA: The couple I referred to went on to have another child a year or two later, and that child was on a medical monitor for the entirety of his first year, maybe longer - I can't remember for sure how long. While it gave the parents some peace of mind, I don't know that they fully slept well until said child was much older.
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