Concerned About Unconventional Mental Health Interventions?

Concerned About Unconventional Mental Health Interventions?
Alternative Psychotherapies: Evaluating Unconventional Mental Health Treatments

Sunday, April 1, 2012

Causes, Effects, Statistics, and SIDS; or, Pop in a Pacifier?


Many readers will have come across the idea that the reported increase in autism has as much to do with changed diagnostic categories and changed reporting procedures as it does with any actual changes in this serious mental health disorder. Autism is not the only problem for which changes in definitions and reporting have had an effect on nationwide statistics. Until Kempe and his colleagues formulated their descriptions of child abuse in the early 1960s, little information was available, and injuries that we today would think begged for investigation were recorded as accidental. Do the same issues apply to Sudden Infant Death Syndrome? This is more than an abstract question, because the answer is needed to help us understand what child care methods should be recommended to new parents. (N.B. I do not claim that the answer will be found below; I’m just planning to discuss some factors that are relevant.) Because there are probably multiple causes for SIDS, it’s important to have an accurate measure that will let us know whether a specific factor actually makes a difference.

As parents and many non-parents will know, the official position of the U.S. government is that SIDS rates have been and will continue to be reduced when parents follow the advice given by the Back to Sleep program (www.nichd.nih/gov/sids/). This parent education program concentrates on baby sleeping position as the primary factor in SIDS, with the prone (tummy down) position rejected in favor of the supine (on back) sleeping position. Beginning in the 1990s, this program was diametrically opposed to the earlier conventional wisdom, which was that babies should lie in the prone position because that would make it easier for them to clear their airways if they should spit up or vomit. It was a hard sell to parents, because they were inclined to do what they were accustomed to and what was advised by their own parents and other experienced caregivers. Nevertheless, more and more (although not all) of parents, doctors, and nurses have bought into the Back to Sleep program.

Proponents of Back to Sleep have pointed out that the SIDS rate has dropped since the program began, and this is certainly true.  However, it is also true that the rate had been on the way down before the program began, and its trajectory has not changed much. It is also true that ascertaining that an infant death was caused by SIDS is not a very simple matter. There are alternative categories for deaths of this type. They may be classed as “accidental suffocation and strangulation in bed” or as “cause/unknown/unspecified”. (“Murder” is another possibility, but that’s a different story.)  As SIDS rates declined around the beginning of the present century, the rates of deaths in those other categories actually increased (see Shapiro-Mendoza, Tomashek, Anderson, & Wingo, American Journal of Epidemiology, 2006, Vol. 173, pp.  762-769).

More research in this area has yielded information about the complexities of SIDS and underlined the fact that there is no single factor at work here. For example, Li et al (American Journal of Epidemiology, 2003, pp. 446-455) interviewed a sample of mothers whose infants had died suddenly and unexpectedly, and found that one factor appeared to be being put to sleep in an unaccustomed position. Babies who had been used to sleeping in the supine position were more likely to die when placed in prone than those who were accustomed to lie in the prone position, suggesting that parents need to be in agreement with each other about sleeping position, as well as in agreement with child care staff or grandparents who may decide to use the prone position that they find more familiar.

Further research by the same authors (Li et al., British Medical Journal, 2006, issue 7532, pp. 18-21) brought up a new and potentially important factor in SIDS causation and prevention. This was the use of pacifiers (or “dummies”) --  a practice much hated and condemned by many parents and amateur advisers. Li et al interviewed mothers of babies who had died from SIDS and compared them to mothers of healthy babies who were matched on measures like age and socioeconomic status. They found that although the risk of SIDS was significantly greater for babies who slept in the prone position and did not use pacifiers, there was no difference in risk of SIDS for the pacifier-using babies, no matter which position they slept in.

In spite of the concerns raised about changes in the SIDS rate, and in spite of the demonstrated effect of factors other than position, we continue to have a public health emphasis on the supine position as the best intervention for SIDS prevention. But isn’t it time that other factors were emphasized as well? How about a Pop in a Pacifier program--  or would that be too shocking for people who hate to see the pacifier habit begin?  How about a Talk to Your Child Care Helpers program--  highly relevant, when so many babies in the U.S. have multiple caregivers? It’s not even certain that sleeping position is the major factor in SIDS, so why put all the public health eggs in this one basket?  

  
  

18 comments:

  1. The issue of accident vs. foul play reminds me of the co-sleeping debates. Lots of co-sleeping advocates insist that the "I rolled over my baby in my sleep and suffocated him" line was probably just a convenient coverup for infanticide. I've never been sure what to think . . . Many (most?) poor families I've known co-sleep (and not because they've read Dr. Sears), so I'm always leery about the systemic effects of officials declaring it dangerous. (But then again, I once represented a baby (as an ad litem) whose sibling had suffocated while co-sleeping. In that case the caretaker admitted to being on certain medications (with sedative effects) at the time the accident happened, so I could see either side citing a case like that as proof of their point of view...) But I digress . . .

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  2. Interesting points, Anon. The complications are greater than either the law or research can really deal with. In the case you mention, for example, the adult needs to be on medication and perhaps knows that it's not good to co-sleep under the circumstances-- but the baby is used to it, cries and cries when not taken into the co-bed, and the befuddled adult gives in, with tragic consequences. One of the issues is that in reality babies and young children influence parents, although society tends to act as if the parent alone decides care routines.

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  3. After reading your essay, I wondered if any studies have been done on lung maturity/surfactant abnormalities. Apparently, there had been a number of studies done in the 1990s in this area. I wonder if that proved a dead end.

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  4. I remember that surfactant work, but I haven't seen anything new about it for years---and nothing about a connection with SIDS.

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  5. My 8month old son Kyler passed away 10/14/11 from Sudden Unexplained Infant Death Syndrome. He was a happy & healthy baby. We also have 3 other boys ages 12,10,&7. I didn't breast feed the 2 older boys, & the 3 older boys never took a pacifier. I breast feed our 7 year old for about a month. Our 7 year old wouldn't sleep on his back so I totally went against what I was taught & he slept on his stomach Of course I woke up about every 5 sec. to check on him, but that is the only way he would sleep when he was NB to about 3months or so. I had c-sections with the younger 3. Kyler & my 10 year old was scheduled C-sections our 7 year was an emergency C-section. All 4 boys did sleep with us in our bed time to time. Kyler was breast fed till he was 4months old, he was our only child who took a pacifier( the hospital where I had him at advised against it especially because I was breastfeeding)He would sleep with us sometimes & sometimes in his play pin(it was in our room.)He always slept on his back , along with our 12 & 10 year old. Kyler & I would take naps together. Kyler's passing isn't like most SIDS/SUIDS deaths.

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  6. I will have to tell our story in parts so i dont make it to long for one comment...So Kyler was happy, health chunky 8 months & 12 days. Who was breast fed, took a pacifier, slept on his back, alone & with us at times. he started crawling really good before all this happened, he was always smiling I called him my cutie patootie, When I would rock him to sleep I would pat his butt & humm "Bicycle for 2" over ^ over til he feel asleep. I will share more but I have to wait for the first comment to be approved so I know where I left off.

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  7. kimberd4, this is such a sad story, and I'm sure the hearts of all who read it will go out to you.

    As you say, this is not the usual SIDS story, and I think it shows that no matter how hard we try to do things right, we can't be in complete control of life-- even the lives of the ones we'd do anything to protect.

    This happened such a short time ago, and I'm wondering how your older children have been managing. Your whole family must have been devastated.

    Please tell us more if you want to.

    With great sympathy,
    Jean

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  8. On Oct. 11,2011 Kyler woke up around 6:30 am played for a lil bit & was laid down for a nap around 8:30 am I was at work & Kyler & my husband we're at home. Kyler always took long naps. My husband went to wake him up around noon. so he could feed him lunch & run errands. Kyler was laid down in our bed by himself on his back. My husband found him on his stomach with his head turned to the side, one eye open & making a grunting noise & he kept "stretching" My husband calls saying Kyler is acting "funny" like he's still tired but he's strecthing & looking at me with one eye he is making a grunting noise. I could hear the grunting noise over the phone it wasn't a grunting noise like he had to have a bowel movement it was like a grunting sighing noise at the same time. That was scary just a really haunting sound that I hope I never hear again. I asked if his color was good just incase he got something in his mouth, his color was fine & he wasn't put on the floor to get anything in his mouth.

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  9. When I got home my husband handed Kyler to me by this time both eyes were rolled back in his head, he was still grunting then I noticed about every 30 sec. he would arch his back & his hands curl inward that really scared me when 911 showed up I told them I thought he was having a seizure but he was breathing on his own. I know CPR so I made sure to check for breath sounds. When we got to the first hospital they couldnt get the seizures stopped no matter how much meds. they gave him. They intubated him just to help him breath a little better to him for a CT, Ct showed he had lack of oxygen to his brain & no one knew why or how long. We was told his hands curling in meant "posturing" which was a sign of severe lack of oxygen to his brain & they was going to lifeline him & for us to say goodbye because he probly wouldn't survive the trip. When we got to the children's hosp. where they took him we was so happy Kyler was Alive!

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  10. But he was on life support. They did any & every test under the sun EEG,EKG, CT, MRI, Neuro checks etc. about every 12 hours. his seizures were stopped but his brain was swelling. I remeber asking the doctors if they could remove his skull to let his brain finish swelling they said they would have to check his scans. His scans showed total lack of oxygen to the brain all the way to the brain stem. Kyler was brain dead. I knew what brain dead meant, I've worked as a Nurse Aide for 12 years so I know some things about the medical field. So I asked what does he have to be doing to come home? We will take him home on a ventilator, feed tube, paralized, however we can get him we just want to take him home. They said we couldn't he had no brain waves. & his b/p was running dangerously high they was afraid his heart would give out. his rectal temp was no higher than 94f that was being covered with warm blankets, "bear-huggar" & 2 knitted hats on. they said this happens with brain death. Our poor little Kyler's face was so swollen from the meds, i.v., & his brain swelling. I also wanted to mention that although my husband & I understand they had to do a job. But Parents/families of babies who die from SIDS/SUIDS have to be investigated, when we got to the 1st hospital an investigator was already there asking questions why we was trying to focus on Kyler. When we got to the 2nd hospital Child Protection Services wwas there to hear our side. When we finally came home my husband had to go to the police station & make a statement, & the CPS lady came to the house to check on us & the other 3 boys about a week after.

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  11. Like I said we knew they had to do all this especially when parents hurt babies, but it was an added stress that @ that time you don't want to even deal with. So Thursday Oct.13, 2011 we had a friend bring the older boys to the hospital to see Kyler & told friends & families to come say goodbye. The next day Kyler was to be taken off life support. I feel like we took the best approach with telling the boys we started with Kyler is really sick & no one knows why that is why you see all these tubes & they doctors don't think he will get better. then we answered the questions & ate lunch went back up to Kylers room & told them this machine right here is the only thing helping Kyler breathe. & he can't stay on that machine anymore. Our oldest bawled & walked out of the room. I told them when they take him off this machine he will die. My 10 year old (9 @ the time) said can't they buy him a new machine. I said they could but the machine has done all the work it could for Kyler & there is no other machine to help Kyler. Our 7year old said he:ll be dead than right? Yes when they take him off this machine he will be dead. We gave them a break & went into the family lounge. A little while later I was going to head to Kylers room so I asked the boys if they wanted to come Our oldest said no the other to wanted to go. When we was is his room I told them it's ok to touch him you wont hurt him our 7yr. old was nervous @ first then I asked our 10yr.old if he wanted to hold him, (our 10yr. old & Kyler had a very special bond, Kyler was his baby to) He said yes he wanted to. I figured he would be to afraid of all the wires & equipment. It was the sweetest & saddest thin I had ever seen. my 9 year old holding his 8month old baby brother who is dieing & he knows Kyler is. That was their special moment I just wish I had taken a picture of it. Our oldest never came back to the room

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  12. we spent that last night holding Kyler, rocking him, patting his butt, humming over & over again "Bicycle Built for Two" , & of course crying. Sometimes we wasnt for sure if we was going to throw up or not. on Oct.14,2011 around 8:00 am My husband & I escorted Kyler along with the surgical team to the operating room. We folled them all the way to the operating doors. Cried, kissed Kyler goodbye, hugged him, told him we would see him again. Walikng away was the hardest thing. We donated Kyler's organs & he has saved 4 lives his heart to a 9mon lil girl in AK, his liver to a 1yr. old boy in NY, his left kidney to a 67yr old lady in Michigan & his right kidney to a 19 yr. old guy in IL. So Kyler does live on in these for people & he is our hero & angel. We left the hospital that day with our world shattered, babyless, & completely ehausted mentally & emotionally.

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  13. So we left that hospital with no baby but all the baby stuff all over the house. The first thing we did when we got home was look for somthing that smelled like him, we found his boppy pillow that smelled like his sweaty head & a dirty onesie for us to nap with. My opinion is this we had 4 happy healthy boys. They save give your baby a pacifier I DID,Back to Sleep I DID, Breast feed, I DID, Dont swaddle or let him get to hot. I DIDN'T, tummy time is floor time , I DID, I DID EVERYTHING I was supposed to do & he still died from SIDS/SUIDS. So suggestions or preventing SIDS as some call it might help lower the risk but it didn't help Our Precious Kyler

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  14. We have since been in touch with Dr. Hannah Kinney the leading SIDS/SUIDS Researcher from Children's Hospital Boston. We spoke with her on the phone & she thinks we witnessed SIDS. We have since gave her our total consent to Kyler's medical records autopsy & autopsy slides, in hopes that Kylers case could give them some insight us some insight & answers along with other grieving families & future babies to be born. Thanks for letting me share my story ♥

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  15. kimberd4, thank you so much for telling this very sad story. For readers who have only encountered unexplained infant deaths as statistics,this will give them a vivid picture of what families actually go through. It's so good of you to allow researchers access to the records-- many people just can't cope with that idea.

    I hope you will one day be able to keep your happy memories of Kyler and forget the agony at the end.

    Jean

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  16. Thank you Jean, As far as the research goes I'm sure it would be a very hard decision for some to make. but for us we didn't hesitate. I'm sure we will never get a different cause of death as much as we would love to, just so we have a name, reason, questions answered. But who knows maybe Kyler's Story is the missing link.I'm glad I got to share our story. As hard as it is it helps me to get it out. :)

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  17. I'm a bit late to commenting. But, the presumed reason that pacifiers prevent SIDS is because it prevents Deep Sleep (Stage 3/4 NREM) at least according to the AAP Back to Sleep committee (Kattwinkel, Moon, etc.).

    So, regarding pacifiers the question should not be simply are you for or against pacifiers? It should be are you willing to reduce slow wave sleep to possibly decrease the rate of SIDS. I think if there were no consequences on a childs mental/emotional/intellectual well being the answer would be simple. But all the research I've read is that Slow Wave Sleep is a very important part of a childs development. The AAP's theoretical/presumed reason why the supine sleep position reduces SIDS is because it reduces slow wave sleep. Also, look at the time when kids die of SIDS...it's typically in the first one or two sleep cycles and typically between the ages of 2 to 4 months of age. The first one or two sleep cycles in a night contain the most NREM deep sleep (later cycles contain more REM sleep).

    The real question is: Is it worth reducing Deep Sleep for a possible decrease in SIDS. Remember that Deep Sleep is very important to things such as memory consolidation and even the regulation of many hormones. Just food for thought.

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  18. I think you're jumping to conclusions, "How the...". First, very young babies don't usually manage to keep their pacifiers in after they fall asleep. Those who are skilled at thumbsucking in the early months are more likely to manage that trick--- and of course it's easier to keep sucking on anything while lying prone.

    Are you willing to argue that babies who sleep poorly for various reasons develop less well? Breastfed babies wake more often than the bottle-fed ones-- are less likely to die of SIDS-- and are more likely to be of higher than average intelligence. Myself, I'd argue that these effects are all artifacts, and not really caused by breastfeeding, any more than I'd expect better development to be caused by sleep events.

    I notice that your page associates plagiocephaly with poor development. Although plagiocephaly is certainly unattractive by conventional standards and to be avoided if possible, I think you'll find that most of the data on this come from past times when babies identified with plagiocephaly were also badly neglected and often lived in institutions.Today, we see well-cared-for babies from affluent families who are showing plagiocephaly.

    You also refer to differences in motor development and in scores on the Denver, as results of supine sleeping. Keep in mind that most of the criteria on infant scales are aspects of motor development,because there is very little else that you can get young infants to display. Any change in developmental milestones from the normative data (gathered from prone-sleeping babies) will appear to indicate slowed development, but is not necessarily meaningful because the motor differences wash out by about age 2.

    As for the idea that an increase in autism is caused by changes due to supine sleeping, please look at the article "Preventable forms of autism?" by Arthur Baudet, Science, Vol. 338, 19 Oct.2012, pp.342-343. Beaudet discusses genetically-determined errors of metabolism and the possibility that dietary deficiencies may be at work in some forms of autism-- a normal diet may not be sufficient for infants with some metabolic errors. (Of course,this does not mean that feeding autistic children the missing nutrients at a later age can correct autistic development.)

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