H.R. 669 – Sudden Unexpected Death Data Enhancement and Awareness Act

admin : July 10, 2013 7:49 pm : Uncategorized

legislationMost of what you hear about legislation revolves around controversial ideas and issues.  So rarely do you hear about those pieces of legislation that seem small and seemingly unimportant but have the potential to make great changes.  The Sudden Unexpected Death Data Enhancement and Awareness Act is one of these simple pieces of legislation.  It will improve each state’s comprehensive death scene investigations as well as standardized autopsies in order to ensure that all professionals are provided with the same education regarding the definition of Sudden Unexpected Infant Death.  It will also increase community awareness of Safe to Sleep and support for grieving families. 

Surprisingly at this time, diagnosis and determination of cause of death varies not only from state to state but within states from medical examiner to medical examiner.  This makes it difficult to maintain an accurate national record of the number of SIDS incidence across the country.  This legislation would also “modify the national death case reporting system to assure that such system provides for population-based data for ages 0-4 years of age and facilitates the understanding of the root causes, rates, and trends or SUID and SUDC with respect to such ages”.  Why is this important?  Consider this, without a national definition of what consititues a sudden unexpected infant death, it makes it difficult to determine the prevelance and thus becomes more difficult to provide the proper education to help reduce these incidents.

It seems that there should already be a common definition that is being used but this is not the case.  This legislation will help to aleviate this problem and help research and advocacy groups better understand the prevelance of these deaths.  This is the first real legislation that has ever gotten this far in regards to SIDS and other sudden unexpected infant and child deaths.  This legislation would also allow for grant money to be funded to organizations that provide education on safe sleep as well as bereavement support for families who have suffered from a sudden unexpected infant or child loss.  The opportunity to increase awareness and continue to provide support to grieving families is something we should all be contacting our representatives about. 

In this time of bi-partisan fighting over highly controversial topics, this legislation could have a positive impact on families and children across the country without the controversary.  The bill is sponsored by Frank Pallone Jr. (D-NJ) and co-sponsored by Peter King (R-NY), Jackie Speier (D-CA), Gerald Connolly (D-VA), Carolyn Maloney (D-NY), Charles Rangle (D-NY), Julia Brown (D-CA), and Ann Kuster (D-NH).  Send your thoughts about the importance of this legislation to not only your local representative but also those listed as sponsors of this bill.   Moving it through to a vote would go a long way in bringing national attention to this issue and the need for continued funding for education and support. 

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Safe Sleep Gift Bags

admin : July 1, 2013 8:15 pm : Uncategorized

There are many products on the market that claim to reduce the risk of SIDS.  The products in this bag are those which are endorsed by the National First Candle/SIDS Alliance group and/or the American Academy of Pediatrics.  The products are also endorsed by SIDS Resources, a Missouri organization dedicated to public education surrounding sudden infant death.  These products are reinforced by evidence based theory and research.

  • Pacifiers – Recommended by the American Academy of Pediatrics.  Studies have shown that pacifiers given during nap time and night time sleep have a protective effect for sudden infant death.  Pacifiers should not be inserted after the infant falls asleep, and parents should wait one month before introducing the pacifier to breast fed babies.
  • Sleep Sack – No need to use a blanket with the “wearable blanket”, approved by First Candle/SIDS Alliance to reduce the risk of sudden infant sleep bag items
  • “This Side Up” T-shirts – This adorable little t-shirt is a great reminder of the appropriate sleep position to all caretakers of any baby!  Back to sleep for the night time AND nap time!
  • We have included a developmentally appropriate picture book to prop in front of babies in order to facilitate tummy time when AWAKE!  Tummy time is important for motor development and to reduce the head flattening which may occur if a baby is on his back too much when awake.  Remember, Back to Sleep and Tummy to Play!

The use of wedges or other positioning devices for sleep is NOT recommended!! There are reports of babies who have succumbed to sudden infant death while sleeping in one of these devices, and the possibility that the device itself was a contributing factor in these deaths cannot be ruled out.  Also, there is new evidence that bumper pads are also hazardous and should not be used. 

So if you’re looking for the perfect gift for that upcoming baby shower, contact SIDS Resources at 800-421-3511 on how to order one of these WONDERFUL gift bags!  For only $20 you can not only show the mom-to-be how much you care about her and the baby but you could also save a life!  Contact SIDS Resources for more information on how to order one of these Safe Sleep Gift Bags at 800-421-3511.

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From Tragedy to Teaching…

admin : June 5, 2013 4:56 pm : Uncategorized

Six years ago I started on a journey that would take me from the darkest place I could have imagined to a place where I am able to reduce the likelihood of some other mother experiencing the pain and loss of a child who was by all appearances normal and healthy.  It has not been an easy journey and I am still experiencing fall out from that day on September 2, 2007.

Lucas James was born on April 26, 2007.  It’s funny but I can’t remember now exactly how much he weighed, or how long he was, but what I remember most was that he was the only one of my children (I had two at the time) who I actually went into labor with.  He was an impatient child from the beginning.  I remember not being ready (I mean I still had a week left right?).  Lucas had other plans and he had decided that April 26th was the day to start those plans.

He was born by cesarean section just like his sisters.  He let out a healthy cry and received high apgar scores.  He WAS healthy.  He wasn’t born before 35 weeks, he weighed more than five pounds.  He was our first boy (and at the time what we thought would be our last child).  He was the first grandson, the first nephew, the first in so many ways.

We brought him home and did all the things you’re supposed to do (just like we had with our other two children).  We swaddled him, because he seemed to sleep better.  We put him on his back to sleep in the crib.  I attempted to breastfeed and we encouraged a pacifier. We even started tummy time when he was about 6 weeks old.  He interacted with us, and we played with him.  He was perfect.

Of course there were things we did that we had done with our other children that at the time didn’t seem unsafe.  We had bumper pads in the crib, we didn’t room share, I was a smoker (although I did not smoke in the house).  We kept Lucas swaddled well past when he needed to be, we had done all these things with our other two children with no ill effects.  I could look back on these things and wonder “what if” but it ultimately doesn’t change the outcome and there is no way to know that it would have made a difference.

See that’s the thing with SIDS.  There’s no smoking gun, there’s no terminal illness, there is no evil stranger that parents get to blame or throw their anger at.  You only get to sit there and wonder “what if”.   It seems easier to me to rationalize a child who has been ill or sadly has been killed by some accident, at least then you have an outlet for your anger and grief.  But who do you get angry at, who do you blame when your child just goes down for a nap and never wakes up?

We were visiting my mother for Labor Day weekend in Chicago.  It had been a beautiful late summer weekend and we had taken Lucas for walks and to church Sunday morning.  He was particularly talkative that morning and we laughed about it as we left church.  We put him down for a nap around 1:00pm.  He was fussy so we swaddled him put him in his crib on his back.  He had just learned how to roll over that weekend and must have rolled himself over during his nap.  At about 3:30pm we decided that we should wake him since he had been sleeping a long time.  At that point he was gone, we didn’t realize it until much later after the doctors and paramedics, police officers and pastors came and went.  Lucas was gone long before we ever went down to wake him.

SIDS happens so quickly.  I don’t even know that had we been watching him intently that we would have been able to stop the chain of events that occurred that day.  Naturally we spent the better part of the first year numb and in shock.  I will admit that there are still days, six years later when I feel numb, or angry, or dumbfounded. 

We threw ourselves into the research to see if we could find a cause.  The most recent research suggests that there is an imbalance or decrease in the amount of seratonin that these infants have in their brain stems.  I’m not a doctor but I’ve had enough biology to know that this kind of makes sense.  Your brain stem controls ALL your major bodily functions (monitors oxygen levels, regulates breathing, regulates temperature) so if Lucas didn’t have enough of what his brain stem needed to regulate these things it stands to reason that combining that with other factors created a “perfect storm” so to speak.

Was it my fault?  Had I done everything we teach to those in our Safe Sleep seminars, would that have made a difference?  The answer is….I don’t know, probably not.  For six years I blamed myself, I blamed God.  I came to realize though that perhaps the “reason” for why it happened isn’t as important as what we do now that it has happened.

I’m sure that some who have lost a child to SIDS may feel like they are being accused in some way when we talk about Safe Sleep and educating those about what they can do to reduce the risk.  See, there’s the key word “reduce”.  We can’t prevent, or predict so even if a mother or father does EVERYTHING by the book, if it’s going to happen it’s going to happen.  Until they determine a test or procedure that can detect who these vulnerable infants are, all we can do is “reduce” the risk.

It is not my fault that Lucas was a vulnerable infant,  that he was within the critical development stage of life, and that he he had just learned how to roll over.  I could look back and say, gosh I should have checked and rolled him back to his back.  Or, gee I shouldn’t have swaddled him he was way to old.  But that doesn’t get me anywhere and my tragedy should have some positive end to it.

We teach safe sleep because we believe that all babies should live.  I teach safe sleep because helping one family reduce the risk of losing their baby means that my loss has a positive end and Lucas’ death means something other than sadness and his short life was a gift and a lesson that I can pass on to other families.

Know this, if you’ve lost a child to SIDS it’s not because you didn’t know what to do or that you did the wrong thing, it just happened.  But this doesn’t mean that we should take what we learn about Safe Sleep and keep it to ourselves worried that others who know we have lost a child will judge us and wonder which of those Safe Sleep things we didn’t do.  We should be shouting it from the rooftops so that other families and young mothers who really DON’T know what do will have a fighting chance.   If we lost our babies to SIDS and we DID do all the right things, how much more at risk are those that DON’T know what to do?

Remember….we can reduce the risk if …. each one teaches one!

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