Saturday, October 6, 2012

Some Facts About SIDS

October is Infant Loss Awareness Month. October 15th is the actual "remembrance" day. I normally don't talk about SIDS on this blog, but being the month for it...

SIDS affects around 2,500 babies every year. It is the number one cause of death (COD) for infants up until one year of age. However, it can affect older children. Children as old as two have died in their sleep for no apparent cause. These deaths are usually labeled "sudden unexpected childhood death" (SUCD).

Speaking of labels, there are different ways that SIDS deaths are labeled. They include: "sudden unexpected death in infancy" (SUDI) and "sudden unexpected infant deaths" (SUID). You might also see it listed as "sudden undetermined death of an infant." These all mean the same thing: that the infant's death has no apparent cause.

SIDS cannot be prevented. There are no "signs" that it is going to happen. Most parents put a seemingly normal, healthy infant to bed, only to wake up hours later to find them gone. There is lots of information out there that claims that SIDS can be prevented, but this is not true at this time. Any products that claim to reduce the risk of SIDS or prevent it are just out to get your money. The FDA has not endorsed any of these.

Babies have died from SIDS while sleeping in cribs, car seats, swings, pack n plays, and laps. Not all babies have been sleeping, either, when they passed from SIDS. I personally know parents who were holding their babies, both baby and parent wide awake, when the baby died.

SIDS is a cause of death by exclusion. That means that every other cause of death has been eliminated and no cause was found. The fact that the word "syndrome" is in SIDS is misleading. The only "symptom" of SIDS is death.

SIDS is NOT:

- suffocation (accidental or otherwise)
- sleep apnea
- seizures
- asthma attack
- any kind of asphxiation

Research for SIDS is seriously underfunded. It does not get the attention that cancer or heart disease does, despite the fact that it is the NUMBER ONE cause of death in infants. There are several research centers that are doing amazing work, including one in Boston.

There is no known cause for SIDS at this time. There are several theories, however. One of the most prevalent, and the one I stand behind at the moment, involves low levels of serotonin. Unfortunately, there is no way to test for these levels and it's something that is discovered in autopsy reports. The low levels might affect breathing, which is how the two relate. More research is needed. To read about Dr. Kinney and her research at the Boston Children's Hospital, go HERE.

SIDS cases have dropped in the past few years, but we don't know why. Although the "Back to Sleep" campaign gets a lot of credit for it, rates were actually dropping before then. There is a big possibility that the reason it appears that SIDS cases are dropping is because coroners and states have different ways of reporting the deaths, causing a coding issue. In other words, the same number of babies are dying from SIDS, but they aren't being counted in the statistics.

One of the main problems with SIDS is that parents are often looked at with suspicion. Many parents have undergone police investigations, had social workers involved, and are considered by family, friends, and doctors as having done something wrong. The fact is, most parents who lost their babies to SIDS followed ALL of the "risk reducers" and still lost their babies. (I was lucky in the fact that, living in a small town, the people who surrounded Toby's death were very understanding with us, from the paramedics to the funeral home staff.)

There is no such thing as "near-SIDS." This is something that was used in the past but is no longer used in the medical community. If you hear it being used, then someone is not up-to-date. Instead, the correct term should be "ALTE" (apparent life threatening event). Although in an ALTE, the child might stop breathing and need to be resuscitated, and in some cases babies who have had several ALTEs have later died from SIDS, they are not one of the same. There can't be a "near-SIDS" because we don't know what SIDS is. There can be a "near-death" but that's where the correlation ends.

As far as SIDS being murder that's just "covered up", this was a popular theory by a well-respected doctor in the United Kingdom. That doctor has since lost his medical license and the parents that he helped convict later had their convictions overturned. So don't believe everything you hear. SIDS is NOT murder. An autopsy can tell the difference.

There are ways to reduce the risk of causing harm to babies. Getting good pre-natal care and not smoking around them are common sense measures that will keep them healthy. Co-sleeping and putting them on their backs to sleep are heady topics, however. While there are studies that show that not co-sleeping and placing infants on their backs might reduce the risk of SIDS, there are other studies that show that co-sleeping can REDUCE the risk of SIDS. In addition, there are some studies that show that back sleeping is not beneficial to all babies.

The parents that I know and are friends with who have lost their babies to SIDS are without closure and answers. We might never know why our babies died. The guilt, sadness, and frustration never goes away. Losing a child is never something you "move on" from or "get over." Hopefully, though, one day there will be enough research to help future parents not have to live in a world where SIDS is a reality.

4 comments:

Jayden's Mommy said...

Thank You, Rebecca this is very well explained and easy to understand. I know we follow every measure that pediatrics and doctors advice when we had our babies. Up to this day we have spent a lot time and money in getting second opinions as to what happen to our baby, Jayden. Not a single answer. The low serotonin levels theory is something that does make sense to me so far. Im constantly follow by this shadow of pain that doesnt go away. Thinking of Toby. Also of you and Sam and Iris. Many huggs.

Rebecca Patrick-Howard said...

It took us a year to get the death certificate and the official cause of death. During that time, we weren't sure what it would be listed as. It was a weird kind of relief to actually get it.

We wonder if Toby had a seizure or maybe had the biotinidase deficiency like Iris does. Or, if perhaps he had a Chiari Malformation that compressed his brain stem like I have...so many things that COULD have killed him. In the end, we just don't know. There is a stark kind of emptiness in that that eats at me, and makes me worried about my living children.

I think about you and your family a lot.

Maxie's Mommy said...

Maxie's death is not called SIDS in his autopsy report. It's just unexplained. I don't believe that the rates of SIDS has been lowered at all. I believe that these deaths are just not reported as SIDS. For example, in Oregon, the coroners are not allowed to report a baby's death as SIDS. Probably in other places as well. I don't know what the politics are about but there are politics. In fact, when we took Mo to see a "SIDS specialist" that was the only take-away. He explained to us that this is political. It's crazy that this is the leading cause of death in babies....that mothers and fathers all over the world worry about this killer....that they check on their babies throughout the night whether or not they even know anyone whose baby has died of SIDS (I know I checked Max ALL of the time)...and that there STILL is not enough money to fund the research! Infuriating!!!!

Rebecca Patrick-Howard said...

Yep, it's infuriating.

Katie (who lives in Oregon and lost a baby to SIDS) and I have talked about the lack of SIDS as COD. She talked to one of the state people and apparently, even though it's not reported as SIDS, in Oregon the deaths are still part of the SIDS statistics. In Kentucky, however, they are not. So it's different even state-by-state. Toby died of SIDS. The coroner called it SIDS. His death is listed as "Sudden Unexplained Death of an Infant", however. They are now saying that SIDS is an offset of this and that more states will start using this term in the future.

I guess, at that time, it will REALLY look like SIDS cases have dropped. Ha.