Thursday, April 7, 2011

What Did Megan Olivia M. die from?

Its a question that will forever be burned into my mind and many others.  What did she die from? Why did a healthy, happy, beautiful little girl die in her sleep?  Looking at the stats of your blog you can see what people search for to find your blog.  I have seen this question multiple times lately, what was it? 

You can't call it a disease, nothing was found.  SUDC, sudden unexplained death in childhood.  What is SUDC?


SUDC (Sudden Unexplained Death in Childhood) is the sudden and unexpected death of a child over the age of twelve months, which remains unexplained after a thorough case investigation is conducted. Similar to SIDS (Sudden Infant Death Syndrome), SUDC is a diagnosis of exclusion - given when all known and possible causes of death have been ruled out. [By definition, SIDS applies only to the death of babies younger than 12 months, while SUDC victims are past their first birthday whose deaths go unexplained even after an autopsy, a death scene investigation and medical history review.]


Its a band aid for parents.  I imagine it must be what you would call a natural death?  Nothing is natural about your child going to sleep one day and never waking up.  It isn't an answer but It's all I have.  Its all so many of us have, be it SIDS or SUDC. 

When you think of SIDS, you think of all the precautions you can take to protect your child from this 'thing'.  Fan in a room, baby on back, keep them away from smokers, NEVER CO SLEEP, don't do if you are obese etc etc.   I know in my grief journey, I have only met one person who had a co sleeping accident.  Meaning the child was rolled onto.   In my journey and its been a long road and many many people to many that I have met, almost all of us had our children die ALONE.   Alone, not co sleeping accidents.  I'm so tired of people assuming SIDS is co sleeping accidents.  Yes there are safe sleeping practices we should all follow but the fact is, SIDS and SUDC is not suffocation deaths.  Our children just die and they cannot find a reason as to why, that's why we get the diagnosis we get. 

Alone.  Why?  Why did something so simple, so natural as a nap take away my child forever?  

The majority of these deaths are children face down.  When you think of SIDS babies, children under a year old many people think... Oh well you had your child on their stomach, they couldn't move their head.
Yet, my child, a 18 month old who could walk, talk, jump, rip blankets off placed her head face down and died.  Older children move if something is bothering them, she could get up and walk. 
So how can I possibly think that just because you put a child on their stomach that is the reason they died of SIDS? Once they start growing and getting more mobile, you can't choose how they lie.  They choose.  It's their choice how they sleep.

My personal opinion is that its something inside of them that just doesn't work right.  Something in their brain and their hearts that misfires.  I'd like to hope that its not painful, that its just them nodding off.   It is something, it is not their environment, it is not how we take care of them. 

I'm jaded and all the awareness ads bother me.  Classifying co sleeping deaths as SIDS drives me nuts.  So many people do all the right things and yet their children still die.  Its not that it isn't some good information but I cannot stop thinking that my healthy 18 month old child died from this as well.  She wasn't some helpless child who couldn't move her head.  She could walk, she could talk, she could rip blankets off and she died.  It makes you rethink everything. 

There is nothing you can do but spread awareness.  Most people are shocked that this can still happen after the age of 1.   It isn't known about like SIDS because while its the same thing, they cannot spread awareness about it.   What can you do to prevent a child from over the age of 1 dying?  Nothing, you really think a fan will help?  You think we should strap them on their backs.  A toddler strapped to her bed so she cannot move off her back while they sleep, is that a good idea?   Its all hogwash and they know it, they know nothing and that is why no one hears about it.  

Your child, up to age 15 can die in their sleep.    Die unexpectedly and you will receive this diagnosis.  After that age I have not found what they call it.  People can die at any given moment , all you can do is live and love and cherish each moment.

http://www.sudc.org/MediaEducation/FactSheet/tabid/99/Default.aspx

10 comments:

Susan said...

Yes, it happens to adults too SUDS - Sudden Unexplained Death Syndrome. I think you hear more about SIDS because it is more common and because there are measures you can take to lower your risk - but even breastfed babies, in their own crib, in their parents room, with no smokers in a 100 miles, sleeping on their back, still die of SIDS.

Jenny - my heart goes out to you. I think it is just normal to torture ourselves with this. I know why Catherine died. I have the name of the infection, and a acause of death on her death certificate. Does it help? Not really. I still want to ask - but WHY DID SHE GET IT? Why did she die when every other child I know is still alive?

There was a mum at our graveyard who was desperate to know what her son had died of - I kept wonderfing if it would help her. In the end, I don't think we ever get a satisfactory answer to the WHY question.

Holly said...

It's so scary to think that your baby could die at anytime, even after a year. Such a paralyzing fear. I wish that this didn't happen. No parent should have to endure this.

Holly said...

I added Megan to my list ♥

Anonymous said...

My 14 month old daughter died almost a month ago while she was taking a nap. I put her down at 11:30am and 2 hours later when I went in to check on her, she had already passed. We haven't got the result back from the medical examiner's office, so we don't know what the cause is. It is very sad and I know exactly how you feel.

Anonymous said...

My little girl was 22 months old when she passed away in her sleep in 2012.
All you said is true and it is sooo frustrating when people ask or refer to the preventative measures for SIDS. My LG could of jumped out of her cot if she really wanted to. Something has just stopped working to make her go to sleep and drift away. Dear me, its hard... But i am so blessed to have known her and i am sooo proud to b her "umm" hehe as she called me.

Anonymous said...

I have a heart condition called prolonged qt syndrome there are many types I have type 2. But thrre is type 3 that when your heart is beating slow it can stop its genetic. I have a friend who's 14 month old died from that. Prolonged qt syndrome is a defect in the electric function in the heart

Geri Lehner said...

Jenny,

I love how happy you look in your profile picture. I know the journey to your new happiness wasn't easy. I have been checking your blog periodically ever since your first post on the Mothering grief forum after Megan's loss http://www.mothering.com/community/t/1213457/i-am-lost-updated. Your story touched me profoundly. I lost my precious baby girl Zoe in 2001.

I am curious about the vaccine connection and if you feel it was a factor in Megan's death. Encephalitis (brain inflammation) is linked to the pertussis vaccine http://www.greatergoodmovie.org/TGG/wp-content/uploads/2013/04/GGFastFactsPostcard-2013-4-20.pdf,
and in your above post you mentioned that Megan was given her 4th DTaP vaccine the day before her death, that preliminary autopsy results showed there was "cloudy fluid around her heart and her brain was slightly enlarged", which would indicate brain inflammation and that you filed a VAERS (Vaccine Adverse Reaction) report.

Can you please share your feelings as to whether the vaccine was a factor in Megan's SUDS death?

Thank you, my thoughts and prayers are always with you.

Unknown said...

My 17 month daughter died in her sleep on 11/11/2015 she was healthy happy and very smart she was never sick it hurts so bad to find your child dead in her crib my heart is so broken I miss her so much. Still waiting on her autopsy report. I just wanna know why she died I can't sleep nor eat she was my everything.

Anonymous said...

"So many people do all the right things and yet their children still die."
Yes. Yes. I wish I could let go of the what ifs and the judgement of others.
I KNOW I was a good mother, that I did all the right things. But I hope I can believe it as well, one day.

Jennifer Planta said...

I have a little boy named darien alister,he just passed away last June 8 2016.He's a very energetic boy,funny,loveable very sweet, healthy, polite, his bday will be on July 10 and he'll be 4 and he's suppose to go to school this Sept. And he's so excited. He even told me what he wants on his bday a spiderman cake and spiderman drum. He loves that character so much his favorite color is red. We had all the plans for his bday. I just put him to bed on Tuesday night June 7 found him dead the next morning.a healthy little angel who just wanted to sleep. He even did a video of running man on that night. We didnt even know that will be his last video. We called him our running man.Doctor didn't know the cause of his death. They did the autopsy in the afternoon and called us the next day, and they said that they didn't get anything, test result is unknown.it's very hard for me as a mother not saying goodbye or how much you love him everyday of your life. I miss his hugs and kisses his voice saying I love you mom everyday and it kills me thinking that his not coming back anymore. I keep on praying everyday that this is just one bad dream and I will wake up and see my little boy again. Up to now still waiting for the result doctor said that they will run some other tests. Rip my running man we love and miss you soo much!!!!!❤❤❤❤