This might sound strange, but sometimes I feel such a sense
of hope. I feel that way now. In these moments, I feel like my “old”
self, which I know I’ll never really be,
but it’s nice to have glimpses of it.
I feel like I can smile without feeling guilty, and I feel like I. Can.
Do. This. I feel like I can
breathe. I feel like I can live
with the knowledge that something horrible happened to me, that my son died,
but that I can be happy again.
It’s a good feeling. But I
know it could be gone in a second.
For this reason, I try to soak it up. I try to do productive things because I know I won’t have
the energy to do them again when I’m not feeling so great. Sometimes I write thank you cards or
respond to the hundreds of messages that still need responding to. Other times I work on the fundraiser or
actually (gasp) get some grading done.
I
joined a new support group through Solace House. Everyone has lost a child, but these children have died at different
ages and from different causes.
It’s odd how much I have in common with some of these parents. Death dates, middle names, and of
course, our shared loss. It
surprised me how emotional I got when I shared Max’s story. It surprised me because I’ve been able
to talk about it openly lately.
I’ve actually even talked with some of my students about Max and
answered their very thoughtful questions.
Yet, when I sat in a room full of people who know what it means to lose
a child, I crumbled and sobbed. I
couldn’t even speak through my crying.
It’s been a while since that happened, but I think I needed it. No matter how good my days feel, there
will always be some pretty heavy emotions that need to be released beneath the
surface. I won’t share any other
stories from my support group because they aren’t mine to share. I will say that I feel that this is a
group that I truly belong to, despite my hesitations to join it.
One
thing that has not given me any comfort lately is hearing about other parents
who have lost babies to SIDS since Max’s death. There have been many of them. Too many. And the connections are just plain
strange. One of them is a
childhood friend of Lori’s. One of
them is a patient of a friend of mine who is a midwife. She delivered her baby, actually. The former of the two lives in Jackson
County. The investigators told her
that they have had more cases of SIDS in the past few months than they have
ever seen. The latter lives in
Gardner. The police there told her
that her son’s death was the sixth
SIDS case in six months in Gardner
alone. How naïve was I to think
that SIDS didn’t happen that often anymore? How would we know, though? How many stories of babies dying of SIDS have you seen in
your newspaper or on your newscast?
None? Neither have I. There is a real problem with that. I almost feel, actually I do feel, like we parents live in a
bubble sometimes. In this bubble,
we don’t know that our babies are at danger every time they fall asleep. I mean, we do, but we really
don’t. We know that it could happen, but it happens to other people. And you never have to hear about those
other people or their sad, helpless stories.
I
always thought, and statistics would back me up, that SIDS was rare and
something that could be prevented by following a specific set of preventative
measures. Unfortunately, I was
wrong, but not because I was uneducated or uninterested in knowing the
facts. If you know me or have read
my blog since the beginning, you know that I constantly worried about Ethan
dying of SIDS when he was a baby.
Obviously, I did my research.
I bought the most highly recommended mattresses, the baby monitor that
alarmed you when your baby failed to move the recommended amount of times, I
didn’t allow him to be around smoke, I didn’t use bumper pads, blah, blah,
blah. I did everything right. What I’ve learned since Max died is
that none of those things prevent SIDS.
Nothing prevents SIDS. Absolutely NOTHING. I’m not trying to scare people. I’m sharing what I’ve learned and what
pisses me off about the general public’s thinking about SIDS. It is something that is mysterious,
unexplained, and absolutely unpreventable. It’s funny that books on grieving your child’s loss state
that, but I don’t recall reading that anywhere
before Max died. I was always
under the impression that if you followed all of the guidelines, you could
prevent SIDS.
A
lot of the investigatory procedure involving sudden infant deaths is dictated
by horrific cases from long ago. A
mother in California murdered several of her children and successfully passed
them off as SIDS deaths. Even less
was known about SIDS in the early 90’s, so it was fairly easy for her to do
this. Eventually, her secrets were
revealed, so the original investigators looked negligent. Maybe they were; who knows. After this highly publicized case, law
enforcement agencies changed their protocol for investigating infant
deaths. That, obviously, was a
good thing. I’m sure you know that
with every “good” change comes some sort of “bad” though. The bad here is that medical examiners
around the country became more hesitant to label sudden infant deaths as “SIDS”
for several reasons. Labeling a
death SIDS is basically like writing “I don’t know” on the death certificate
under “Cause of Death.” Label too
many infant deaths as SIDS, and then we have an epidemic that causes panic and
fear in parents everywhere. Make a
mistake in labeling a murdered child’s death as SIDS, and…well, you might just
be burned at the stake. There are
no telltale signs of SIDS; some research has found that SIDS babies have tiny
hemorrhages in their lungs, but like all fields of research, experts disagree
about the significance of this evidence.
Basically, labeling a baby’s death as SIDS is too conclusive and
inconclusive at the same time. You
close doors while leaving far too many others open. So, medical examiners pretty much reserved their SIDS rulings
for a few cases a year.
NPR
recently did a piece on this phenomenon.
Some major metro areas in the United States reported no deaths attributed to SIDS last
year. Really? Gardner has six cases in six months,
but Washington D.C. has none?
Instead of labeling sudden infant deaths as SIDS, many medical examiners
will attribute these spontaneous, unexplained deaths to any cause that they can
possibly find. This is called
“code-shifting,” and it is believed to be the cause for the apparent “drop” in
SIDS deaths in recent years.
Unfortunately, these deaths are being attributed to causes that a
logical person can’t possible believe are terminal conditions that could cause
death. I have friends whose
children have supposedly died from a “red” throat, positional asphyxia from
sleeping in a car seat (who has never seen a baby sleeping in a car seat?!?!?),
infected ears, and unexplained (doesn’t that mean SIDS???). These are the things listed under
“Cause of Death” on the death certificate. My point is that SIDS is
somewhat rare, but it’s not nearly as rare as statistics would tell you. It’s impossible for researchers to
figure out whether any of the recommendations are working to prevent SIDS
because it’s impossible to trust the statistics. When you hear that SIDS rates have dropped drastically in
the past few years, what has really dropped drastically is the labeling of
sudden infant deaths as “SIDS.”
The
“Back to Sleep” campaign is a perfect example of how the public is tricked into
believing that SIDS is preventable.
In the mid 90’s, we were suddenly told that babies should absolutely not
sleep on their stomachs or sides because this would increase the risk of
SIDS. Before, we were told that
babies absolutely should not sleep on their backs because that would increase
the risk of SIDS. So, we switched
it around. We put our babies to
sleep on their backs, but guess what has happened? Babies still die sleeping on their backs. Max is one of them. And if you include some of these bogus
causes of death in the statistics for SIDS (the CDC has actually created a
whole umbrella chart of attributed causes of death that they consider to mean
“SIDS,” including positional asphyxia, which is the most commonly used cause of
death in “code-shifting” cases), then you will see that the numbers have not
reduced one bit. There have been absolutely no
significant drops in SIDS cases since the “Back to Sleep” campaign
launched. Coincidentally, the
“Back to Sleep” campaign kicked off right around the time that medical
examiners and law enforcement agencies changed their investigatory procedures
regarding infant deaths and labeling them as “SIDS.” So, the drop in cases that you often hear about is likely
just the result of these new, stringent procedures regarding labeling infant
deaths as SIDS.
I
know I just threw a whole lot of information at you. I feel a bit like a walking Encyclopedia or WebMD entry
sometimes. This is information
that I would have never sought out before Max died because it would have just
given me further proof that my child could be taken from me at any moment. Obviously I don’t blame anyone who
hasn’t lost a child to SIDS for not knowing this information. It seems to only become significant
after SIDS makes an unwelcome appearance in your life. And just so you know, I sought out this
information after the medical examiner who performed Max’s autopsy mentioned it
to me. It’s no secret in the world
of death, apparently. Again, I
share this information not to scare people unnecessarily, but to give you a
glimpse of the horrors that keep on coming after your baby dies. Think about how horrible it would be to
have your child die of something so mysterious and unpreventable. Now, imagine what it would be like to
be one of the parents whose baby’s death is attributed to positional asphyxia
or an inflamed throat or some other “cause of death” that is completely
preventable. A sense of ownership
or blame is associated with these “causes of deaths.” If your baby had a sore throat, you would take him to the
doctor, right? You certainly
wouldn’t let him die. If your baby
were being asphyxiated, you would do something to help him, right? If you didn’t, wouldn’t you feel at
fault? Diagnoses like this are
completely irresponsible and a manipulation of obvious facts. They shift blame from some unknown,
unexplainable, and absolutely unpreventable condition and put it on the
parents. It’s just adding horror
to an already unimaginable tragedy.
Now
I will hop off my soapbox.
