Wednesday, October 8, 2014

What you didn't know about SIDS

Before I begin this post, I feel I need to give you a warning & a disclaimer.

 WARNING: This post contains details about my son's death that I haven't previously disclosed on this blog. 

DISCLAIMER: What I am about to tell you is knowledge and suggestions based on my experience. Not every SIDS mom has had my same experience & their opinions may certainly differ. Also - I hope they will not feel judgement from me or anyone else as they read this. In addition- obviously you will make your own choices about your child's sleeping environment - however because of my experience, I will strongly suggest you change it if it's unsafe. 

This post has been swirling in my mind & heart for some time. I finally have had the courage to write it down and share it. 

The official cause of death on Link's death certificate says:

Manner of death: Could not be determined.
Immediate cause of death: Sudden unexplained infant death. (SUID)

The CDC website says "Sudden unexpected infant deaths are defined as deaths in infants less than 1 year of age that occur suddenly and unexpectedly, and whose cause of death are not immediately obvious prior to investigation. Each year in the United States, about 4,000 infants die suddenly of no immediately, obvious cause. About half of these Sudden Unexpected Infant Deaths (SUID) are due to Sudden Infant Death Syndrome (SIDS), the leading cause of SUID and of all deaths among infants aged 1–12 months."

So - I thought I was knowledgeable enough about SIDS. I read What to Expect When You're Expecting and What to Expect the First Year. I got the Baby Center e-mails. I had three healthy, living daughters. But I had NO IDEA. No idea. 

The thing about SIDS is that there IS no way to prevent it. True SIDS, where the infant is face-up, with no obstructions anywhere and they just "forget to breathe"... how can you prevent a death like that? I do not believe that was Link's situation, however. Not all, but most of the moms in my SIDS group found their children face down - or next to something so that they were "re-breathing" air & had a carbon monoxide-type effect on them. 

Now - I have to say here that in my heart, I know that Link's mission here on earth was finished & he had greater plans on the other side. I know that in my heart. I know that if he didn't die in his sleep, he would have left the earth a different way. Even with that said, you'd better believe I am making changes with Noelle. Changes that I hope will keep her alive. I wanted to share them with you, hoping it will help someone & possibly save someone the heart-shattering loss we've experienced.  I WISH SOMEONE HAD TOLD ME THESE THINGS

First, yes, you should do everything the CDC says to do to "reduce the risk of SIDS." You can find that list HERE. My experience, however, was that the factors in Link's death didn't have to do with most of those things. He was always put on his back. He was on a firm sleep mattress with a fitted sheet. He wasn't dressed too warmly. No one smoked around him. He did not sleep in our bed. He used a binki. He was breastfed. He was immunized. However, with all the things I did right,  there were some things I was not even aware of that I did wrong. 

*DO NOT PUT THE MATTRESS AT AN ANGLE! I think with most of my other babies, at one time or another, I put some large blankets under the head of the mattress. This helped with drainage when they had colds and I've seen it recommended for acid reflux and colic. Link's crib mattress was always at an angle in the hospital, so I figured it was safe. But, here's the thing. When I found my baby boy, his head was at the bottom of the crib. I had placed him on his back at the top of the mattress - head at the top of the mattress. I believe he started rolling and the angle of the mattress facilitated the roll and that's how he got to the bottom of the crib. Also... with his head at the bottom of crib & the mattress at an angle, it was that much harder for him to lift his head. I just don't think he had the neck strength. IF you REALLY need to have the mattress at an angle, I would recommend The Guardian Sleeper. You can actually strap them into the crib with no way of rolling. Noelle has been using it for a couple of months. It takes some time to get used to, but gives me so much piece of mind! 

*STOP SWADDLING ARMS WHEN THEY SHOW SIGNS OF ROLLING! After watching The Happiest Baby on the Block before having my first baby, I decided my babies were all going to be swaddled - and they loved it!! They always calmed right down and felt so secure. Link wasn't swaddled when he was in the hospital the first 2 months of his life, but after he got home, I found that he really loved it. At one point, I thought maybe he was getting too big to fully swaddle, so I tried to just swaddle his lower half. He really hated it. He didn't sleep as long or as soundly so I went back to fully swaddling him. Biggest mistake I've ever made in my life. He was fully swaddled when I found him and I cannot help but believe that if his arms were not swaddled, he would have been able to push up and gain the neck strength to get out of the situation. Nowhere does it say this on the CDC website. In fact, many sites recommend swaddling to REDUCE the risk of SIDS. I think you are safe to swaddle until they start rolling - no more than 2 months. Noelle fought me on this, too, & wouldn't sleep as good without being fully swaddled, but you know what? Sorry to be abrupt, but I'll take a fussy baby over a dead one any day!!

*BE VIGILANT AT NAP TIME! I know most people believe that babies usually die in their sleep at night, but many babies in our SIDS group, including Link, died during the day. So - while the CDC says to share a room with your baby until they outgrow the risk (which we do with Noelle), many times it happens during nap time when neither parent is in the room anyway! Right now, I always have a video monitor on her when she takes her naps & I carry that video monitor with me. 

*NO BLANKETS OR BEDDING IN CRIB AT ALL & NO BUMPERS! This is one that is on the list for the CDC. Seriously, though. How many of us just plop our baby in an empty crib? It seems so cruel. Ireland LOVED having things near her face - her hands, her blanket... anything within reach. I bought this whole new crib set for Link - including a $60 bumper set. He was nowhere near the bumper when I found him. HOWEVER, there were blankets at the bottom of the crib. I put them there, thinking they were nowhere near his face - and he couldn't roll from his back to his tummy yet - so it shouldn't be a problem, right? WRONG. Many of us found our babies dead on their tummies and it was only the first or second time they had known of them rolling over. The blankets were not covering Link when I found him, but they were around him and, again, it leads me to believe the re-breathing theory. Just GET RID of the blankets and the bumpers. Trust me. It's not worth it.  (For comfort purposes, again  - the Guardian Sleeper would be safe, or get a sleep sack)

Another thing you didn't know (you might assume, but don't really understand the magnitude of)  is the devastation that SUID or re-breathing or asphyxiation or whatever you want to call it, leaves behind. There is no way to fully describe it. And I will do everything in my power to stop it from happening again. I am not asking you to go buy a bunch of monitoring devices like many of us post-SIDS moms do, but hopefully these suggestions are straight-forward enough that you can follow through with them - even when it's hard. 
Because let me tell you something...
 it was never going to happen to me. 
To us.
To him. 



Jessi Scott said...
This comment has been removed by the author.
Jessi Scott said...

Thank you for sharing your story. I've been there too.

Patricia Potts said...

you did a beautiful job of covering a very painful subject. I think the newspapers should pick up this and run with it as well as magazines. You have a story and specific suggestions and the courage to speak up. God Bless you my beloved daughter...and you little Link

MaryAnne said...

Thank you for your story!! I wish you had a better outcome! I too had an experience, and couldn't agree with you more. When my son, Christian, was 5 weeks old, I had just breastfed him and put him to bed. I thought I followed all the "rules" laied out for things to prevent SIDS or SUID. My son had been in bed about 15 minutes and I got a horrible feeling. When I went to check on him he was blue. The only thing near him was his blanket I covered him with to "keep him warm" The blanket was near his face when I found him. I don't know what caused it, or why it happened. I'm just grateful that you were strong enough to put it out there. People don't think it will happen to them. I thank God everyday that I got that feeling to check on my son, and I almost ignored it. But he is 8 now. An amazing child of God. I hope someone can learn from these stories. Save a child. I know I think it was the blanket. God bless you and your family! Stay strong, you will see your son again.

emma said...

Thankyou so much for sharing this, it's an all too important reminder that it is real life and it can happen to anyone. God bless Link and your family.

Kristina said...

Thank you for sharing your experience. I am a mom of an almost four month old and I plan on using some of your advice. God bless you and your family.

Camille said...

Thank you for sharing your story, and these tips, I have been swaddling my baby boys arms still because it seemed to help him sleep longer, but I am going to take your advice, and stop. Thanks again for your testimony and example. Your children are so blessed to have you as their mom.

truman show said...

As a SIDS mom I appreciate and love you for
sharing your experience. May the Lord
continue to bless you and your family.

Molly said...

Thank you for sharing. I am so sorry for your loss.
I would highly recommend getting an angel care monitor to everyone with babies, because they have a pad that you put under the babies mattress and it senses the babies movement. If there is no movement for 15-20 seconds and alarm sounds. It has saved both my babies a couple of times and gives me a peace of mind while they're sleeping. They aren't too pricey, we got ours for around $100.

Heather Fisher said...

At what age do you recommend using blankets again? My twins are 10 months and I have always used blankets. Now I am wondering what to do to keep them warm? Suggestions?

Chris and Tara Stanley said...

Do you still swaddle them with the arms out? I swaddle my baby, but I leave her arms out because she doesn't like her arms trapped. Is that considered unsafe as well?

Heidi Hamilton said...

Thank you for your comments.

Heather - statistically, 90 percent of SIDS cases happen before 6 months (though 2 or 3 of the moms in my SIDS group had babies that were 6 months old). After 1 year of age, they don't see it as SIDS anymore. So - at 10 months, your twins aren't as high risk, but for me, I'm not going to use regular blankets till she's one. Just can't risk that 10% at this point.

Tara - Yes, I would swaddle with her arms out if she is showing signs of rolling at all. Right now, I swaddle just her lower half during naps - with a video monitor on her always - and I put her in the Guardian Sleeper (link in my blog) at night.

Heidi Hamilton said...

Heather - now that the weather is cooling down, I am concerned about keeping my baby warm, too. Right now I am putting her in very warm PJs & then the Guardian Sleeper acts as a blanket. Her little hands still seem to be freezing, though, so I put those little gloves that strap on them & that's seemed to help.

Crystal Spencer said...

Thank you for sharing your experience. I just went upstairs and took the blanket off of my sleeping six-month-old. I didn't understand the "why"s behind a lot of these recommendations until I read your post. I am so sorry for the loss of your baby boy.

Heather Fisher said...

Thank you for your reply! Since reading this post I have started swaddling them with their arms out. It seems to work great. Thank you for sharing your experience! It is so kind of you to share your heartache in hopes that it will help someone else. I have three children and I learned things I never knew or thought of. (Like Blankets) What a sweet boy you had and will have again someday! xoxo

Tiff Meister said...

Heidi, Thank you for sharing this post and being as straight forward as possible. All moms should read this! I couldn't help but sob at the picture of Link. I love you all!