SIDS which stands for Sudden Infant Death Syndrome is a diagnose of exclusion. Which means that when a seemingly healthy infant dies an autopsy is performed to see if the infant's body leaves any clues to what caused a baby to die. A death scene investigation is also performed looking at the environment the baby died in. Where the baby was found. A crib, in an adult bed, on a couch, in a swing or maybe a car seat. They also look at what position the baby was in when it was found. They also receive medical records from the pediatrician or hospital if applicable. Parents or caregivers are questioned and give either a coroner, medical examiner, or death scene investigator the details leading up to the child's death. It becomes an investigation for these professionals to find out what happened to this baby and to be able to give parents answers to what caused their child's death. I personally believe infant deaths that occur when the baby is sleeping is probably one of the hardest deaths to diagnose. SIDS and other sleep related infant deaths are hard to determine because when talking about a baby dying from SIDS or SUID (Sudden Unexplained Infant Deaths) first of all their body is very small which makes it harder to find clues that will explain their death. Also if a baby dies from SIDS there are often no signs, which also happens to be true when an infant dies from suffocation like a parent who bed shares and somehow the child suffocates whether from a parental layover or something obstructing the baby's airway. Now if an adult suffocated there would be physical signs but an infant is so tiny than the signs you would typically find in adults you most likely would not see in an infant.
Let me give you a good example:
My son Jaleel died while we were bed sharing even though I was not over weight, on drugs, and had not consumed alcohol. I placed my son on a pillow and rolled over and went to sleep. Now the next morning the pillow was found on top of his body. Now when the coroner came and questioned me I did not tell him about the pillow, I was scared. So they had a missing piece to what caused his death so they had to work with the clues they had which was he was breastfed 2 hours before bed, he was alive when I went to sleep, he was put to sleep on his back, but was found on his stomach in the morning, we were bed sharing and what physical signs they found on Jaleel and the light pink froth that was found on the sheet, pillow, and the dried froth that was on his face, and his autopsy. Now his autopsy came back saying "Undetermined with a history of co-sleeping" Which basically means they believed he died as a direct result of bed sharing but they could not prove it so had to put his cause of death as "undetermined" My son suffocated from that pillow but even an autopsy couldn't determine if he suffocated. The medical examiner who performed my son's autopsy said that with an infant that small even under a microscope it is very hard to tell if a baby suffocated.
Now we have come a long way in twenty years. We know some rules to help provide a safe sleep environment that could lessen the chances of an infant dying. Like back to sleep, putting your baby on their back to sleep EVERY TIME, even at nap times. Babies who are put on their back to sleep and then sometimes on their stomach have a higher risk of dying from SIDS than a baby who is always placed to sleep on their stomach. We are learning that blankets, bumper pads, fluffy bedding, and bed sharing increase a baby's chance of dying. We know breastfeeding is very beneficial to the baby in many ways including lowering the risk of SIDS, but breastfed babies die from SIDS too! We know that introducing a pacifier can also reduce the risk of SIDS, and that over heating can contribute to SIDS and having a fan in the babies room can help to circulate the air that also can reduce the risk of SIDS. The more babies die (sadly) provides us with more answers and ways to protect our baby while sleeping, but there is one problem I have found with all this knowledge. First of all you have the parents who will say this is a little over board and that she was raised sleeping on her stomach, with bumper pads, blankets and she survived. Yes this mom did but they are thousands out there that didn't. Just because you survived or your kids did doesn't make it okay not to practice safe sleep guidelines for your present or future children and grandchildren. We need to be better than previous generations who didn't have the knowledge we do. We need to practice safe sleep to lower the risk of infant death and also for the babies who died because without them we wouldn't know what we do today! Please don't let their deaths be in vain, please provide a safe sleep space for your baby so at least something good can come from their death.
Another issue I have is the Internet. Now the Internet can be an amazing thing and it can be a horrible tool also. If you google bed sharing or co-sleeping you will find many articles citing how dangerous the practice is and how great it is. Online everyone can write a status, a blog, an article where others can search which can be great but you need to consider the source when it comes to taking advice on how you raise your children. Dr.Sears & Dr.McKennaMcKenna are not trained in SIDS reduction, they aren't SIDS experts and do not know the dangers that bed sharing can cause to an infant. Dr.Sears advises parents to bed share because it worked for him & his wife. Now that is great that it worked for his family. I am glad he doesn't know the pain and guilt that comes with losing a child to a bed sharing accident, but just because his kids were lucky does not mean it is a safe practice. When you become a doctor you take an oath to do no harm. I am sure in these doctors minds they aren't doing harm but sadly they are. Now Dr.McKenna has made some outrageous statements like babies who bed share don't cry. I understand his point for saying this because the mom is right there to meet the baby's needs but ALL babies cry regardless of where they sleep. I bed shared with two of my children and they both cried. Any doctor who studies infant deaths and the causes will tell you that bed sharing is a deadly practice even when so called "safe bed sharing" is practiced. The stories I could tell you like the mom who lost her daughter at 5 hours old after a nurse put the baby on a pillow to help get her to latch on and it worked and mom and baby feel asleep next thing this mother knows her newborn is whisked away as they try to work on her. Could you imagine having your baby and announcing it on Facebook and then hours later you are informing everyone your baby died due to an uneducated nurse? Or the mom who knew the risks associated with bed sharing and just ONE time she put her son in bed while she nursed and they fell asleep and next thing she knows he is dead, he died while nursing and somehow suffocated. Or the mom who bed shared and placed stuffed animals on the floor near the bed in case her daughter fell off the bed, she did fall off and suffocated on those stuffed animals, or the mom who slept with her baby and in the morning her shoulder was pressed into his face. These stories are real, babies die to educated parents who thought they were doing the best thing for their baby and now they have to live without their child and life with a life of guilt and what ifs.
I have really gotten off topic of what I wanted this post to be about and I apologize for that! The problem with SIDS is even after decades of research and infants dying we still can't pin point what is the factor that causes these babies to die. I believe SIDS is real and my heart breaks for anyone who loses their child, especially when you have no clues to why your baby suddenly and unexpectedly died but SIDS and other infant deaths have become a real problem on many levels. Let me explain what I mean. I hope I do not offend anyone, as that is not my intent. This is my personal opinion take it for what it's worth, remember what I said about sources on the internet. First of all, we need to stop using a SIDS diagnosis as this is what by baby died from, when really it's a syndrome of no one knows why my baby died. SIDS isn't a cause of death it's an exclusion of death. All these years and we still don't know why babies die, so it had to be called something and so SIDS is the name, but the term doesn't explain what the baby died of, it explains what the baby didn't die of.
Another problem I have it how SIDS & SUIDS are diagnosed. There is no nation wide protocol, they are no signs to point to a SIDS death. two babies die in different counties both unexplained and sudden infant deaths and yet one baby is labeled as SIDS and the other is labeled undetermined also know as an SUID death. The coroner or medical examiner can put what ever they believe caused the death which is easy to do when you don't have a definitive cause of death. These days it is rare (well not rare but not as common as it was even five or ten years ago) for an autopsy to say SIDS. M.E,'s (Medical Examiners) are using other terms instead like undetermined, SUID, cause unknown SUDI (Sudden Unexpected Death in Infancy), among others. I believe if a baby dies and they cannot find any contributing factors that caused the death then SIDS should be used! Now at the same time I do believe that SIDS is over diagnosed much like ADHD is. When your baby dies suddenly and at such a young age like in infancy parents are counting on the professionals who handle their baby's death to find the answers. No parent wants their child to have an autopsy performed but we don't have a choice as it is a state law when someone especially a healthy child dies. We expect to have answers that is why is it so crucial that the professionals gather all the information they can from all sources they can. Let me give you the opportunity to change how these deaths are handled and how they are classified. There is a bill we are desperately trying to get passed. The Stillbirth and SUID Prevention, Education and Awareness Act (S 1862/ HR 3418) is a bill that would provide education and prevention and a cause for stillbirths and for SIDS and SUID deaths would change so we have a standard across the board of how these deaths are examined and diagnosed please click on this link from the CJ for SIDS Foundation to learn more and to ask your local Representative to co-sponsor this crucial bill
I also have a problem with the terminology we use. There is a difference between bed sharing (when you sleep with a baby in bed with you) and co-sleeping (when the baby sleep next to you, but in their own sleep environment) also know as room sharing. There is also a difference between SIDS and SUID. When an infant dies while sleeping we shouldn't assume the baby died from SIDS, because many babies do not die of SIDS. Sometimes a baby dies from a preventable death like from bed sharing, or a baby who dies from bumper pads, r blankets. These are not SIDS deaths but SUID, and yet when an infant dies the public assumes it is SIDS. We need to distinguish the difference between the different types of sleeping, along with the different types of infant deaths related to sleep.
Until we have better deaths scene investigations (and maybe that includes better training on what a SIDS death consists of and what a SUID death consists of) Now granted, I understand not all deaths are clear but sometimes we are labeling an infant death SIDS when is isn't and an SUID death when it isn't. How can we ever have better answers if these professionals put whatever they want down. This is their job and I would hope they can be professional regardless of their personal feelings. I believe many babies are dying from unsafe sleep and yet without the correct statistics on these deaths we will never have the answers. Regardless if it is SIDS or an SUID death there are steps as a parent or caregiver we can do to reduce the risk of death. You wouldn't risk placing your child in a car without a car seat, so don't risk your child's life while sleeping. Learn from the babies who have died so we would have better answers so your baby doesn't become a statistic. Think of it..babies spend most of their time sleeping, so wouldn't it make sense to protect them from hidden dangers while they do what they do best....{sleep} If you have any questions especially sleep related please do not hesitate to leave a comment, shoot us an email at pausesafesleep@gmail.com or find us on our FB page. Together we can make a difference by educating on safe sleep especially friends or family who are expecting a baby or who have infants and toddlers, by asking your Representative to co-sponsor the bill I mentioned above. Let's worth together to dramatically reduce the infant mortality in our country and other countries as well. Our children are our future, what kind of future will we have if babies keep dying?
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