With September peering its head out from around the corner, we’re all looking forward to a fun Fall — filled with activities and excitement. Without a doubt, our most exciting event on the calendar right now is the CJ Strides for Babies “walk event” we will be hosting in 3 locations (NJ, NY, MD) just a few weeks from now. As the event nears, many of our sponsored walkers are wondering how best they can raise funds for their teams to meet and even surpass their donation goals. We’ve fielded so many inquiries into this matter that we thought it might be helpful to get some extra special input. So we asked NJ Marathon runner Aliyah Cox, who successfully raised over $6,000 for her baby Jaden in May 2009, if she wouldn’t mind writing us a small piece for us to pass on to our registrants. This was her response:

Thanks so much to Aliyah and all of our fundraisers looking to participate in this year’s event. We’re supremely confident that you’ll all be able to meet your fundraising goals and that we’ll have a fun, memorable occasion to enjoy together when the day finally comes. In case you’re reading this and still haven’t quite found a strategy that works for you, here’s a short list of some of our favorite ideas

• Join a Team – More Faces = More Exposure
• Color-Code Everything – Colors are easier for people to remember
• Dress It Up – T-Shirts and Hats add an element of fun
• Use The Internet – Facebook/E-mail are two of the quickest ways to spread the word

CJ Strides for Babies 2009 Information Page

In an exciting move in Washington this week, a new Bill known as The Stillbirth and SUID Prevention, Education, and Awareness Act was introduced by Senator Frank Lautenberg and Congressman Frank Pallone, Jr. Serving as the most influential piece of SIDS/SUID/SUDC legislation to date, the Bill promises to promote unprecedented, positive change by improving death-scene data collection methods, establishing nationwide awareness and education plans, and expanding support services for families in need. As you can imagine, we’re extremely thrilled to see this kind of representation on the Congressional floor. We’re doing everything we can to affirm our support for the Bill and if you’re a reader of this Blog, we urge you to do the same! We’ve taken the liberty of compiling a few useful links for you below so read up, find your state’s representatives, and tell them to pass The Stillbirth and SUID Prevention, Education, and Awareness Act!

Official Press Release
Bill Fact Sheet
Write Your Rep! — contact your House Representative
Find Your Senator — online directory of all US Senators

The Biochemical Genetics Program at New York-Presbyterian Morgan Stanley Children’s hospital is spearheading a new effort by the state of New York to properly identify and treat metabolic disorders in newborn children. Affecting roughly 1 out of every 3000 children born, metabolic disorders prevent the proper absorption of carbohydrates, proteins, and fats, leading to very severe and possibly fatal conditions. In years past, testing for these disorders was largely overlooked (due to unavailability or expense) and as a result, associated newborn fatalities were often reported as SIDS cases. With the law on its side (the state of New York is now mandating newborn screening), the NYPMS Children’s Hospital and its partners at Columbia University Medical Center hope to de-mystify the disorders by providing accurate diagnoses and offering comprehensive treatment options. This is most certainly an encouraging step in the right direction.

Mysterious Ailments May Be the Result of Undiagnosed Genetic Defects @ Columbia.edu

We often talk about the importance of donations to our organization and how without them, we could never wish to accomplish the goals we have set out to achieve. And while we do report on the findings of research funded by those donations and the success(es) of various initiatives there-in, we don’t often give line-by-line announcements of how every dollar was spent (because, well, finances are boring). Despite the lack of discussion however, you may be surprised to find that financial transparency is something we take very seriously at the CJ Foundation for SIDS and has been a longstanding tradition in our operations. We always work hard to make as much information available as possible to anyone who comes looking for it and we tend to think we’ve done pretty well. Apparently, we’ve been doing even better than we thought!

The Bergen Record has just published an article featuring the CJ Foundation for SIDS as one of the highest rated non-profits for its information-sharing practices and financial accessibility. In a survey completed by GuideStar (an organization promoting the public disclosure of financial records) , of the 1,837 non-profits/charities involved, only 13 percent were found to have extensive financial information posted on their websites. When questioned about the organization’s policies and strategies for success, our own Linda Tantawi responded.

“We believe transparency is the key to building a community of donors… We’re dealing with families who have lost their babies to Sudden Infant Death Syndrome,and often they’re searching for information in a moment of grief, where they feel an urgent need to do something to help. It’s our obligation to make as much information available as possible, so people can make informed decisions quickly.”

If you’re reading this wondering where you can get your hands on all that financial goodness, you can browse to the “About Us” section of our homepage and then click on the link for “Financial Information” (or you can just click here). If the posted information isn’t enough, GuideStar.org has a wealth of available data at the expense of a free registration so you can give them a try too. Finally, for those of you still itching for info after all of that, a phone call may be your best option yet–we’ll do our best to get your questions answered.

Charities Stingy With Disclosures @ The Bergen Record

Daily Mail, a British publication, has published an article discussing a recent statement from United Kingdom coroners, pathologists, and SIDS researchers that warns of the dangers of co-sleeping. Citing findings from a small number of studies, the researchers attribute as many as 50% of all investigated SIDS cases to co-sleeping situations. We don’t normally report on articles that are from a less-than-scientific source when it comes to parenting recommendations but we’ve chosen this article because it touches on a familiar topic in its third paragraph.

“But their guidance is likely to anger some parents who argue that sharing a bed strengthens bonds, promotes breastfeeding and is part of child-rearing in some cultures.”

It seems that in England as well as the USA, parents are seeing safety recommendations as direct insults to their personal integrity. We know we just got through posting about our stance regarding this type of angered response but this international example seems to add a sense of urgency to the issue. It’s important that you know our recommendations are based on research and given with the intent of reducing the risk for SIDS. If we didn’t think our advice was in the best interest of you and your child’s safety, we would not be giving it.

Co-Sleeping Article @ Daily Mail

We’ve openly supported breastfeeding as the premiere choice for feeding infants for quite some time. The noted benefits (SIDS risk reduction being one of them) would lead one to believe that the majority of mothers would at least attempt the procedure but despite all of the available information, there are a number of reasons why many mothers are still choosing alternatives. One of these reasons is the fear that the use of a pacifier (another proven SIDS risk-reducer) may interfere with the child’s feeding behavior in conjunction with a breastfeeding regimen. Not wanting to give up the pacifier, mothers often choose against breastfeeding to avoid the rumored feeding complications. We’re happy to report that a recent article in the Archives of Pediatric & Adolescent Medicine demonstrates that this fear is unsubstantiated.

According to the abstract, a total of 1098 reports dating from January 1950 through August 2006 were compiled to investigate the pacifier-breastfeeding relationship. The evidence suggests that there is no negative correlation between the two and furthermore, that any studies showcasing the contrary were likely the result of other “complex factors, such as breastfeeding difficulties”. The report concedes a necessity for ongoing research to better understand the relationship but as it stands right now, previous concerns appear to have been laid to rest.

Abstract @ The Archives of Pediatric & Adolescent Medicine

Jardine has suffered yet another setback in their crib manufacturing practices as 96,000 cribs spanning 7 different models were recently recalled by the Consumer Product Saftey Commission. Nationwide sales of the poorly constructed units were championed by popular stores such as Babies R’ Us, Toys R’ Us, Kids World, and Geoffrey Stores. According to the report, there were at least 10 incidents of children breaking “slats” while inside the crib, placing them at tremendous risk for entrapment and strangulation. Altogether, 31 cases were cited.

This recall was the latest in a series of recalls for Jardine cribs (dating back to June, 2008) bringing the grand total to around 475,000. Needless to say, the name Jardine should be ringing loud by now and if it sounds even remotely familiar, check your model numbers against those printed on the official release @ cspc.gov. If you’re unsure about your crib model, we’d suggest playing it safe and finding an alternative until you’re absolutely positive you don’t have a defective model. You may contact Jardine at (800) 646-4106 from 7 a.m. to 3:30 p.m. Central Monday through Friday.

See the official release @ cpsc.gov

The Consumer Reports Safety Blog that we referenced in our latest post has generated quite a bit of attention from the reading public. As of today, Five products not to buy for your baby is sitting under a pile of 133 comments, many of which contain some unanticipated backlash from offended parents all throughout the country. Apparently, the main problem with Consumer Reports’ latest advice is that it directly conflicts with the views and recommendations of Attachment Parenting advocates (a group that emphasizes “round-the-clock” closeness to infants). While we won’t get into detail over the exact statements that were posted in the comments (though feel free to explore this issue yourself by clicking the link at the bottom of the post) what we will say is this: infant safety is and always has been our top concern. We want everyone to have intimate, nurturing relationships with their children and we know there are a number of ways to achieve that. However, if there is sufficient research or data that lead to recommending a certain product, method, or lifestyle change over another, we won’t be afraid to make that recommendation. We hope that we haven’t offended anyone out there yet but if you ever feel uneasy about something you read here on the blog, our homepage, or elsewhere, why not drop us a question? We’re always here to answer them.

Consumer Reports vs Attachment Parenting @ New York Times

Purchasing baby products can be kind of confusing. With safety as a top concern, we all generally rely on standards and government recalls to keep our homes risk-free. Unfortunately, just because a product is on the shelf with no mention of a recall, it doesn’t necessarily mean that it’s safe (or that you should buy it). Highlighting a few items that fall in the “better left alone” category is an article from the Consumer Reports Safety Blog and we thought we’d share their recommendations. The following items should be avoided whenever possible.

• Bedside/Co-Sleeping Devices - Having your baby sleep with you in your bed may seem like a good idea but the fact is, you place your child at an enormous risk for suffocation/strangulation by doing so. There are products out there that claim to reduce these risks by providing barriers between you and your child but as Consumer Reports notes, these items are largely unregulated by safety standards and multiple deaths have been reported. Even if these items were regulated, we still think they’re bad news to begin with. Your baby should be sleeping in a crib. End of story.

• Sleep Positioners - Another product intended to promote safety, sleep positioners are supposed to keep your baby in a fixed sleeping position (on his/her back) to avoid rolling into danger. The product’s downfall lies in the excess cushioning (increasing the risk for suffocation) that its presence has added to the sleeping environment. We feel that the added risk outweighs the benefit the product attempts to provide and as such, should be avoided (Consumer Reports goes on to suggest that the infants the product is designed for are incapable of turning over at their young age, making the constraint unnecessary altogether)
• Crib Bumper Pads - These pads are intended to prevent bruising and other damage to babies as they move around in their crib. Unfortunately, with the ever-increasing death incidence (Consumer Reports cites one study finding 27 deaths) associated with these products, their efficacy is strongly contested. We urge you to avoid these products from the statistics themselves.

  The article includes two more suggested products to avoid but we feel that they are outside the scope of our mission and so we have not covered them here (feel free to read the article though if you want to find out what they are)

We hope you take these suggestions with you wherever you go and continue to make the right choices when providing for your baby. Safety should always be at the top of your list.

Consumer Reports Safety Blog

The prone sleeping position, (the position observed by placing your infant to sleep on his/her tummy) has been publicly advised against by the SIDS community for over fourteen years. Through international alliances, word-of-mouth, and aggressive public campaigning (most popularly the Back To Sleep campaign), awareness has risen and we’ve seen a sizable reduction in SIDS cases as a result. Today, we rather predictably announce that our stance on prone sleeping hasn’t changed, and a recent article published in Pediatric Journal explains why. The article (citing research investigating sleeping patterns in infants) states that research has demonstrated yet again, that infants placed to sleep on their stomachs are at a greater risk for SIDS than those placed to sleep on their backs. Furthermore, the findings identified other popularized risk factors as sleeping on duvets, sleeping outside of the parents’ household, and sleeping outside of the parents’ immediate proximity.

The findings of this article really aren’t much of a surprise in terms of identifying risk factors for SIDS but they’re significant in that they confirm much of what we already know. We can’t stress enough the importance of preparing the safest sleeping environment possible for your baby and sleep positioning, parental proximity, and bed cushioning are all integral considerations in preparing that environment. Please take the results of this and past studies as evidence and take the steps to keep your family safe.

If you only remember one thing from this post, “Face Up To Wake Up” seems the most appropriate. Oh, and Happy Earth Day!

Pediatric Journal Abstract