[meagz86]

Hi,
I lost my son of four months last August. I have recently received the coroners report which I felt asked more question than it answered... His cause of death was stated as unascertainable (pending ongoing investigation). I rang the coroners office and was rudely told because co-sleeping was a factor that it is not a SIDS case. Though all the research I have done show's that my son ticked all the boxes as a typical SIDS case and was backed up by my doctors who said the same.
After many hours researching the topic I found that Western Australia doesn't use the term SIDS any more but for the life of me I can't figure out why! I'm looking for parents in Western Australia that have received the same outcome with the loss of a child.
We all know that SIDS (sudden infant death syndrome) is not a cause of death only a name given to an unknown or unexplained death so it makes me wonder why my case is different and what gives our coroners the right to decide to call it something different? And as I read through all the official SIDS statistics I see that there is a huge decrease in SIDS deaths in the last five years... so is there? Or is it that they are not counting all these deaths classed as unascertainable.
In the end of the day they are all just words but I feel as though my child should be in those statistics helping to find a cure for this horrible syndrome. And I wonder if I even have the right to use the term SIDS considering his death certificate says other wise?
I would love to hear from others in my situation or just what you think about it.
Thank you

[JudyKayTee]

Unfortunately this is more a discussion topic (as you posted it) than a question about how to cope with the loss of a loved one. "SIDS" is used less and less frequently as more sophisticated testing is used, testing which can more accurately pinpoint a cause of death.

There is no question that co-sleeping is a controversial issue.

When will the test results be available?

[meagz86]

Hi,
Thank you for a reply, sorry I didn't really know where to post this just looking for people in the same situation. It's very hard to find a place to ask questions about this topic.
You ask when the test results are available but that is why I'm so confused... they are available and it was put down as a unascertainable death (they have no idea what caused his death), which has exactly the same meaning as SIDS, everyone with power can't give me a plain answer to why it is different except that the state I live don't use the term SIDS at all any more, and like I said I know that SIDS is not a cause but it is a name given to almost make us feel it was something, even though we don't know what that something is. Now I feel like taking that word away from mothers who lose an infant is unfair and wonder what the point of it is?
I just want to find someone ells who has gone through the same thing and found out how they got closure.
Thank you again

[Fr_Chuck]

I am not sure what answers you are wanting, often there is no idea what caused a death, and that may just be it.

The idea is to go on with grieving. I am not sure if you are wanting to find a reason to blame someone for this. Or is there someone blaming you and you are hoping to find a reason to somewhat clear your feelings of guilt.

[Alty]

I'm so sorry for your loss.

The issue I see here is that co-sleeping was involved. It's possible that your child was accidentally smothered while you were sleeping, which may be why the coroner is not willing to list this as SIDS.

I'm sorry that you're not getting the info you want. Would it make a difference to you if SIDS was the cause of death? SIDS is just another way of saying that the cause of death isn't known.

I also wonder if you're looking for closure, or someone/something to blame for this.

Have you talked to a therapist since this happened?

[meagz86]

I'm sorry to have bothered you all, I don't seem to be able to get my point out as easy as it is in my head... so he died an unacertainable death, he was not smothered or suffocated as that would be a 'cause' of death. I'm not trying to blame any one or myself, his organs shut down and he stopped breathing. That I have dealt with... what I don't understand is why 5 years ago the same situation would have been stated as a SIDS death, but now (in Western Australia) all infant deaths are stated as unknown or unascertainable, I'm worried about the implications of this as statistics show there is decrease of SIDS in the last 5 years.
I have seen a therapist, doctors, coroners and Councillor's and not one of them can straight out answer me and tell me why they are phasing out the word SIDS (I was told if I lived in another state or contrey that it would have been stated as SIDS). I know that SIDS is not a cause (just a word) but it is giving a sudden infant death a name, and I feel as though even a name is better than nothing. And yes it would make a huge difference if SIDS was the cause of death... because it was... It's just they don't call it SIDS anymore, so I wanted to hear from people who have had to deal with there baby dying of SIDS but having the Western Australian Government decide they don't want to call it SIDS and find out how they felt about it.

[JudyKayTee]

I understand what you are saying but I don't understand why a cause of death is so important. You HAVE a cause of death - SIDS was very non specific; unascertainable is very non specific. I don't see a difference in anything but the wording. If co-sleeping was not an issue how did that even come up in the discussion? You appear to know why SIDS is not listed as the cause of death - it's not a recognized cause of death where you are.

SIDS is, as you say, a syndrome. It is NOT a specific cause of death. Even is SIDS were listed as the cause of death it's not really the cause of death - do you know what I mean?

My concern for you is that you are almost fixated on this question, a cause of death, and are not taking the time to either grieve or move on and get some form of closure, even if it's temporary. If the people you have met and talked with cannot or have not helped you, then you need to find a group, a therapist, someone, who can help you work through this.

I think your concern about a specific cause of death (and wanting the death to be listed as SIDS) is keeping you from grieving the death of your child.

If you need a group - here's one in Australia. They can undoubtedly refer you to someone with information on SIDS. http://www.sidsandkidswa.org/About-Us.aspx

[meagz86]

Thank you very much for your words I understand every thing your saying and agree to a certain extent,
Unfortunately through writing it's hard to understand the meaning behind words (and my full story), It's amazingly hard to lose a child and I'm sure I'm many years from excepting it but defiantly in the right path of grieving for myself (as every one is different) it's not a fixation as such, but as I can't bring my baby back I would at least want his death to go into studies to help find a cure for this horrible syndrome, as you said SIDS is not a cause but it is a reality that a lot of babies die from.
Like I said I understand completely what your saying, but I think it is a big deal to be asked "what did you son die of" and me to say "we dont know" when if I lived 1000km away I could answer "SIDS"
I have fantastic support from sids and kids and a wonderful therapist,
And thank you again for the answers, I'm still just hoping to find another parent in my situation...

[JudyKayTee]

I do understand what you are saying and why you are saying it. SIDS is so many things I don't know that there will EVER be a "cure." One factor is diagnosed and treated and another factor takes its place. My cousin lost a child some years ago to what was listed as heart failure. Was it SIDS? Probably - the death certificate said "heart failure" and something about "not clearly defined." She was not at peace for a very long time.

I lost my husband a few years ago. I really do sympathize with you. Losing someone you love is very, very difficult and until you've been in those shoes it's hard to understand the grief and the grieving process.

I hope you find peace - I truly do.

[Alty]

I'm sorry if you misunderstood what I wrote.

I was not trying to vilify you. Not at all.

I simply didn't understand what you were asking.

I would really recommend counseling. There are groups of people that have experienced what you have, and they get together to heal. I highly recommend looking into that.

Stop worrying about the cause of death, and deal with the actual loss of your child.

I myself have had three pregnancies, and have two children. I lost my third in the 3rd month of pregnancy, and it was devastating. I can't even imagine what losing a child I actually held, fed, nurtured and loved, would feel like.

My heart goes out to you.

I only hope you find closure, and stop worrying about the why. Just accept that it happened, and find a way to live on.

I am not religious, and I don't know if you are, but, may God, or whatever you believe in, bless you, and help you through this.

[agrievingmother]

Having recently lost a baby and also living in Australia, we are going through the autopsy/investigation process now. From everything I have read, SIDS is a complete shut down of body organs, sudden and unexpected in babies that showed no health issues. I have read about babies who died of SIDS in their parents arms and though their parents were doctors, died instantly and were unable to be revived.
I think we are being fed a lie that SIDS statistics are decreasing, because babies that would have been listed as SIDS are being listed as 'heart failure' or 'unascertainable' and this perpetuates the myth that a baby sleeping on its back or with minimal bedding is safer than a baby sleeping on its tummy. Babies have died while awake and sleeping upright in their parents arms with no bedding and these babies dies suddenly and instantly and no baby monitor would prevent their death.
I believe the statistics for SIDS are much higher than published. It is the same for postpartum cardiomyopathy. When researchers went through the death records of Californian women who died of a complication of pregnancy, they uncovered that there were twice as many cases are recorded because half the women who had died of heart failure did so outside of 6 weeks after giving birth and were not recorded as having suffered postpartum cardiomyopathy.
If any death of a baby is deemed to be 'unascertainable' it should be recorded as SIDS - to reflect the true statistics but today by classing it as something else, medical professionals can claim a 80% reduction in SIDS and attribute it to bogus recommendations like sleeping positions. Countries with the highest rate of co-sleeping have the lowest rates of SIDS, and yet co-sleeping is deemed to be dangerous! The science and study of SIDS is dubious and the fact that the official rate of SIDS is being hidden by not using the same definition of SIDS as previously, suggests that perhaps the real figure on SIDS is much higher than anyone wants to admit.

[meagz86]

I'm so sorry for your loss agrievingmother. But I would like to thank you for your answer, I'm almost relieved that someone ells can see this going on... not that it does help or change any thing but you have backed up every thing I have been researching. Thank you... if you ever need any one to talk too I would love to listen, all the bestxxx