SIDS cases NOT really declining

This is by far one of the best articles that I have come across in awhile. I read over and over again that the number of cases of SIDS have gone down dramatically due to the “Back to Sleep” campaign and from the fact that parents are being “educated” about not putting soft things in the cribs, not co-sleeping, using fans in the rooms, etc. However, it is widely suggested that infant death rates have NOT gone down at all-that different states and even different counties within the states are simply calling the deaths something other than SIDS, making it appear as though the number of SIDS cases are declining when they really aren’t.

I have met many people who followed ALL of the precautions and their babies still died from SIDS. There is no “foolproof” way to prevent it. What this article explains, too, kind of backs up what I was saying earlier about research. We NEED to keep researching SIDS and looking for answers, because if we don’t, then this is a problem that is never going to go away.

I would personally love to see a study conducted not only on the health and symptoms of the infants themselves, but on the pregnancy in general. I would like to know if there are any similarities between the mothers. One of the prevailing SIDS theories right now has to do with low levels of serotonin in the infants, but we don’t know what causes that and it’s not something that you can test for until after death. I wonder, though, if there are any pregnancy complications (preeclampsia, hyperemesis, depression, problems with the placenta, malnutrition, gestational diabetes) that might contribute to this. Just a thought.

ARTICLE:

 
Every day in America at least 10 babies die suddenly and mysteriously.

Opportunities to prevent some of the more than 4,000 sudden infant deaths every year are being squandered because of a failure to implement simple, national standards for infant death investigations, a seven-month review by Scripps Howard News Service has found.

In fact, we are getting further away from solving the mystery of Sudden Infant Death Syndrome because of sloppy procedures, manipulation of statistics, misguided efforts to protect the feelings of grieving parents, and deliberate attempts to make SIDS go away, at least on paper.

The Scripps review of 40,000 infant deaths going back to 1992 revealed that the quality of infant death investigations, the level of training for coroners, and the amount of oversight and review vary enormously across the country. In many cases, professional bias — both for and against a diagnosis of SIDS — trumps medical evidence.

As a result, the odds that an infant's death will be correctly diagnosed are often determined by geography rather than science. In other words, the same death might be called SIDS in one county and called something else just down the road.

"There's no rhyme or reason to what medical examiners are diagnosing as SIDS, suffocation, strangulation or undetermined," said Theresa Covington, director of the National Center for Child Death Review Policy and Practice at the University of Michigan. "The variability is across the country and within the states."

The confusion comes with a very high price: the deaths of more babies who might have been saved through medical research.

The deeply muddled approach even has many experts questioning if a much-celebrated decline of SIDS deaths since the early 1990s was actually as significant as first believed.

"If we had a standard approach to investigating and classifying these deaths, our approach to prevention and research could be a lot clearer," said Dr. James Kemp, a leading SIDS researcher at St. Louis University. "The whole reason for keeping count is to figure out how to avoid the next infant death."

Yet questionable statistics from this haphazard system continue to guide public policy and outreach campaigns, as well as government research efforts that have devoted more than $110 million to SIDS research in the past five years from the National Institutes of Health alone, plus millions more from foundations seeking to understand why babies continue to die.

"You have to worry about the quality of this data (from death certificates), but there are researchers still using them," said Covington. "I simply don't put any credibility on any research that uses those numbers anymore."According to standards set by the World Health Organization and the Centers for Disease Control and Prevention, SIDS should be diagnosed when an infant less than 1 year of age dies suddenly and unexpectedly and no clear cause of death is found after a thorough investigation that includes an autopsy, examination of the death scene and review of the child's clinical history.

Scripps conducted an extensive study into how infant deaths are investigated in the United States using records provided by the CDC. The records detail the sudden deaths of 40,239 infants, half of whom died in the 1990s and the rest in a five-year period from 2000 to 2004.

The records of the most recent infant deaths, from 2000 to 2004, can be examined in the first searchable database of its kind at www.scrippsnews.com/sids.

The review found enormous variation in how the deaths of infants are investigated and classified. The SIDS rate, according to the data, is 12 times higher in Mississippi than in New York. Most experts agree that the big differences are caused by how the deaths are classified, not by how the babies died.

Variations are sometimes even greater from county to county within a state because coroners take widely different approaches to how they determine the cause of infant deaths in their areas.

Federal records show a dramatic decline in reported cases of SIDS, dropping from 4,895 cases in 1992 to only 2,247 in 2004, the most recent year for which complete data is available.

The records reviewed by Scripps showed that cases of SIDS virtually disappeared in some states and cities over the last several years, but closer examination of the data makes it evident that thousands of those lives have not been "saved," but rather lost under another name.

Coroners and medical examiners said SIDS was responsible for nearly 80 percent of all sudden infant deaths 15 years ago and only 55 percent in 2004. What increased during this time were diagnoses that CDC statisticians labeled as "threats to breathing" and "other ill-defined causes of mortality."

Some researchers think that this "code shifting" of infant death causes has substantially overstated the success of public health efforts against SIDS. The diagnosis of SIDS has been replaced on death certificates by new and vague terms like "undetermined cause" and "sudden and unexplained death."

The result is that, while deaths attributed to SIDS are down, the overall number of sudden infant deaths has remained steady, and even ticked up in some years, since 2000.

Death by another name

"A lot of us are concerned that the rate (of SIDS) isn't decreasing significantly, but that a lot of it is just code shifting," said John Kattwinkel, chairman of the Centers for Disease Control and Prevention's special task force on SIDS. "We don't know where the best place is to put our emphasis on further reducing the risk of SIDS. It is still a very high killer of babies."

The danger is that medical researchers can't trust the causes listed on infants' death certificates, clouding hopes for a solution to the mystery of SIDS — and also masking other risks to babies.

"We are told that physicians should first do no harm," said Henry Krous, a prominent child pathologist and director of the San Diego Sudden Infant Death Syndrome Research Project. "But we need to be aware that we can do harm by using terms that don't gain anything to the understanding of this disorder."



Read more: Saving babies: Exposing sudden infant death in America - Boulder Daily Camera http://www.dailycamera.com/ci_1308...
DailyCamera.com

"Call if You Need Anything" article

An excellent article taken from the Silent Grief Website. The link to the article is: http://www.silentgrief.com/articles/index.cgi?view_records=1&Category=For+Friends&ID=75


One of the most used phrases following the death of a child is, “Call if you need anything.” Friends mean well, but it is a most generic way of backing away from a difficult, uncomfortable situation. Very few parents who are grieving the loss of a child will ever call for anything, even though the needs are many. They simply don’t have the strength needed to make the call.

Instead of leaving an open-ended statement such as, “Call if you need anything”, there are very specific things a friend can do to help a grieving parent that will be appreciated more than words can tell. Most parents need someone willing to listen. There is a need for every parent to tell the story of the death of their child, but very few people are willing to listen because hearing about the child’s death makes them feel too uneasy. By lending a listening ear, you can greatly help in the healing process. Parents will want to tell the story of their child’s death over and over again!

“Call if you need anything.” A parent will not call because grief leaves a heart broken and depleted of any strength. Sometimes it’s all a parent can do to get up in the morning, let alone find the strength to call a friend asking for some help. Instead of waiting for a call, a friend should take it upon himself to go visit the bereaved parents and offer to accompany them to the grocery store, the bank, and even to church for the first few times following the death of their child.

Often a parent will feel totally lost from the grief, and it is difficult to think straight enough to buy food items that complete a meal. Banking becomes ever so difficult. When grief overpowers a parent, any kind of organizational skills become difficult, so a simple bank deposit becomes a very complex undertaking for the bereaved parent.

Going to church for the first time following the death of a child can be the loneliest feeling of all. The songs in church will easily bring on a stream of tears. Seeing the empty seat once occupied by the child can be devastating to the parents. There is a desire to go to church, but grief can bring on an almost paralyzing fear. How much easier the first few attempts at church will be when accompanied by a friend!

Instead of saying “Call me if you need anything”, offer to accompany the bereaved parents to the cemetery. The first few visits there will be extremely difficult, and parents often need someone to help them through this lonely time. You can offer to stay in the car while the parents have some alone time at the actual gravesite of their child. Just knowing you are close by will be a comfort.

Remember that grief does not end for the parents whose child has died. Over time, the grief will soften, but it will never totally go away. Parents need caring, non-judgmental help during this time of grief.

A supportive friend will do much more than say “Call me if you need anything.” A caring friend will truly be there to help with the everyday activities of life until the grief subsides enough that the parents can move forward with some normalcy in their living. Parents need continued help and support following the death of a child. Most always, the little things mean the most. Don’t just offer to help. Go a step beyond, and be there with listening ears and hands willing to help!

If You're Not Christian...

So what about all of those people out there who are NOT Christian and need support for the loss of a child? Well, I'm working on that. I have found some non-denominational support groups but they don't seem to have active online communities. When I do find something, however, that I think is helpful I will post it here.

For the most part, I have found that even if you aren't Christian the Christian-based organizations are still pretty good when it comes to community support. However, you might not agree with the doctrines and ideas behind them which could cause issues somewhere down the road.

As someone that does not follow the Christian faith, I find myself politely nodding my head a lot when other people talk to me about "God's plan" for Toby and various aspects of Heaven and such that I don't necessarily agree with. It's sometimes better to be polite than to enter a religious debate. However, there has to be a lot of Muslims, Pagans, Buddhists, Wiccans, Agnostics, and Atheists out there who are going through the same thing that we are and it would be nice if there were some groups that they could feel comfortable expressing their grief in.

I will continue looking, though, and hopefully come up with some things that might be helpful.


Okay, if you live in California and you are Buddhist, or not, then you can try the following website Zen Hospice Project.  They have a Hospice facility, grief counseling, and other programs that have a Zen aspect to them, although they are open to most people.


Grief Net is non-denominational and asks for a $10 fee to cover costs, but it will hook you up with other grieving people that might be in the same situation as you.

Websites

I've found a few websites that are helpful. I haven't played around with too many of them but I'll try to keep a running list of the ones that I think are of good value.

Centering Corporation & Grief Digest Magazine Online Resources  This site has some good information and links, but it also has products that are interesting as well. You can purchase memory books, for instance, as well as books that talk about grief and loss.

Bereaved Parents of the USA This is a non-profit group and they have quite a few chapters around the United States. It's not just for parents, but for grandparents and other caregivers as well. The most helpful things I have found on the site include a list of really good links as well as an article describing some of the feelings that you may or may not have in the first few days/weeks/months/years.

Baby Steps This site has some "sharing" stories and it's very user-friendly.  It's not extremely comprehensive, but their list of "do's and don'ts" is pretty good. And it has a cute little house as its interface.


The COPE Foundation  This site is very comprehensive and one of my favorite things is called "The 10 Common Myths about Grief and Children." We forget sometimes that our other children are feeling grief, too. Even though Sam is only 3 he still mentions Toby every day and even sings little songs about him.

Grieving for Babies  There are helpful videos on this site and you can also join and become a member to share your experiences with other people in similar situations.

Share There's a lot of stuff on here, but the blog is my favorite. Different people write in it and it's good to get an idea of how other people are coping. Everyone does it differently, but there is still enough of an element of sameness to make you feel like you're normal.

Web Healing  There are lots of things to explore here. The articles are good and there is also an active forum, too, with current threads.

The Compassionate Friends Network   This is one of the most popular grief sites on the 'net. There are events, newsletters, local chapters, and resources listed. There is also an online community that you can join and interact with other members which you may find beneficial.  It's also available in Spanish.

SIDS Center This offers a lot of information related specifically to SIDS. One of the best things is information pertaining to the holidays. I find this interesting because even though we never got to celebrate any holidays with Toby, there will still be an ache that he is not there to celebrate future ones. I was particularly looking forward to Christmas this year, for example.

First Candle This might actually be one of my favorite sites. It is very user-friendly and has a lot of information about SIDS, from autopsy reports to current research.