Sunday, April 29, 2012

Things I encounter on SIDS forums

Mostly, I have had positive experiences on SIDS forums. I have connected with good people and found support and friends. There does seem to be a trend, though, that is disconcerting and extremely unhelpful in most cases. I think I can break it down into four categories:

1. "I almost lost my daughter to SIDS"
2. "SIDS isn't real"
3. "I haven't lost a child to SIDS but I know someone who did so now I am here to tell you all what you did wrong..."
4. "I WON'T lose a child to SIDS because..."

1. "I almost lost my daughter to SIDS"
Scenario: A person comes on and claims that their child "almost" died of SIDS but thankfully lived.
Why it's bad: Aside from the fact that it's impossible (the very name SIDS means "death"-they are probably referring to what they use to call "near SIDS" but now call ALTEs) it's rude. Don't tell a bunch of parents who DID lose their children that yours "escaped" death. We don't want to hear it. It makes us feel more guilty-like you did something right and we didn't.

2. "SIDS isn't real"
Scenario: Someone comes on and tells us that SIDS isn't real, for whatever reason. That's it's really suffocation or some really rare disorder that the doctors didn't catch.
Why it's bad: Telling a bunch of parents whose child died from a syndrome that the syndrome isn't even real?
Note: I DO believe, in some instances, that there might have been something else at play. Sometimes, there are some things that are sooooo rare (like biotinidase deficiency) that an autopsy report might not even pick it up. So it is possible that the coroner missed something. However, you can't say this applies to all cases.

3. "I haven't lost a child to SIDS but I know someone who did so now I am here to tell you all what you did wrong..."
Scenario: An aunt, uncle, friend, sibling...whatever comes on and starts telling everyone that THEY didn't lose a child but know someone who did and now they have all the answers. They then start giving us stats, start talking preventive methods, and generally start lecturing us.
Why it's bad: Preaching to the choir. Most of us know more than the medical professionals do at this point. Don't join a forum and automatically assume you know more, especially if it's your first post.

4. "I WON'T lose a child to SIDS because..."
Scenario: A person joins a group and starts claiming that they've never lost a baby and won't because they have bought a Halo sleeper, use the specially wrapped mattresses from New Zealand, walked backwards three times down a flight of stairs...whatever.
Why it's bad: No products have been proven to reduce the risk of SIDS. Plus, it's mean it tell other parents who have suffered a loss that you are above it.

Guess what, you're not!

Sometimes, a forum can be helpful. Other times, not so much. I am learning to laugh when I can.


Anonymous said...

What broad daylight isn't today?

Rebecca said...

Occasionally, I like to publish random spam that finds its way here. This one had a certain ring to it...

Anonymous said...

My name is Armando. My wife recently had our first baby. She breastfed baby for the first six days. on the 6th day our dr told us it was okay to pump and bottle feed. Baby did fine all day in her rocker (where she was slightly sitting up). We quickly noticed that baby ate more from the bottle, also that baby slept more soundly throughout the day. We thought great! So before bedtime, we fed baby from the bottle, burped her like normal, and laid her down flat in her crib about 45 minutes after she was burped. Definitely long enough to let her food settle. Being she is our first baby, I was up for every movement baby made, didn't bother her or anything, just let her sleep as she got comfortable. about 20 minutes in, I noticed her breathing was starting to sound like she had fluid in her throat. not a lot, she was still breathing, but it got worse pretty quick. within about five minutes I had her in my hands slapping her back getting the fluid out. she started breathing again after that, but it took her a few minutes to recover, then she was finally able to let out a cry.

All studies say that babies that are breastfed are less likely to die from SIDS. All studies say that suffocation seems to be common in autopsies. over HALF of baby deaths are a result of SIDS.

Now my questions and concerns start. I am sure there is a perfectly good reason drs have told the world to lay baby flat on her back for bed time. but, have you ever ate something or especially drank something and laid on your back, straight on your back? it comes back up! No matter what age. Imagine if you had a full enough stomach to put you to sleep.

Mommies do not send out an incredible amount of milk when breastfed, it is no wonder to me why babies that are breastfed are more likely to stay alive. they dont have enough in their tummy to be full. everything that I have read on the studies seem to point to babies choking up their food. and that night was validation enough. maybe people do not find it in the autopsy because by the time baby is in the autopsy, everyone has turned the baby in every direction trying to figure out what is wrong, the milk goes back down.

Baby will sleep in rocker tonight where she will be slightly sitting until we find a solution. maybe tilting her bed down an inch or two so her head is above her feet? that leads to many other problems as you can lead on to. What about not laying her flat on her back not so soon after? well If most babies are under age 1, maybe ever 45 minutes is not enough, as it wasn't for our little girl. Thank God we caught it.

Rebecca Patrick-Howard said...

I appreciate you posting such a thoughtful, detailed comment. There are lots of theories as to what SIDS may be and, honestly, I have to say that I have also wondered about choking myself. My son had severe acid reflux and I know several other infants who died from SIDS who also suffered from it.

I think you have a very valid point about babies sleeping on their backs. Although I am not vocal about this because it can start heated debates, when I had my subsequent child I was not crazy about putting her on her back. She mostly slept on her side. I was right there with her, though. I wasn't sleeping with her-I wasn't even asleep! I stayed awake and worked through the night and literally watched her sleep for her first year. She's the best sleeper we had.

My gut feeling is that there are probably several things that fall under the "SIDS" umbrella. It might be a low serotonin level, it could be a defect in the brain stem for some babies, and (who knows) perhaps it is something to do with regurgitation for others. It's definitely an area that needs more research, however, and hopefully science will one day find the cause and we won't know such a thing.

I am so glad that your little one is okay.