January 5, 2011
Yesterday I had an appointment with my neurologist. I’ve been with him for 10 years and ordinarily he’s a doctor that I like. In fact, he’s been my favorite one over the years. But when I was pregnant with Toby I kind of felt like he let me down and I still have some beef with him. He’s one of the doctors that I went to during that last week of pregnancy when the headache wouldn’t go away and I was having the swelling. Instead of taking me seriously, he told me that I “only had four more weeks” and he sent me home. And, of course, those were the symptoms of preeclampsia that everyone but my PCP missed.
Anyway, I went yesterday and nothing was accomplished but that was okay. It was just a standard visit that the OBGYN likes for me to have. While I was there, though, I told him about the spasms that Toby had had in the few weeks leading up to this death and he said that they sounded like seizures. I thought so at the time and had even asked the pediatrician about them and the ped said that if he had one again to let him know and he would send him to a neurologist. Then he died before he had another one.
I have wondered about that. Although we say he died of SIDS we don’t have the autopsy report back yet and the last I checked the cause of death on the death certificate says “pending.” The coroner told us that it was more than likely SIDS since they ruled out any obvious causes like suffocation, neglect, and all of those other little things that would point to the parents. They also ruled out noticeable illness. SIDS just seemed like the obvious choice and is usually what they label it as after they do toxicology reports, death scene investigation, and medical history checks.
There is still that thought, though, that it could have been something else: a birth defect that we didn’t know of, an allergic reaction to the Zantac that he’d been prescribed for the acid reflux, or seizures that were either hereditary (from me) or due to his birth.
So I posted on FB today letting people know what the neurologist had said. I then had a friend write back and basically say that it didn’t matter why he had died, that either way he would still be dead, but that having answers might bring me “closure.” This has been brought up to me before and I don’t like it.
There are some things that you just have to deal with not having answers for. For me, death is not one of them. I don’t know why I have seizures. I don’t know why I developed preeclampsia. We really don’t know why I had the placental abruption. We don’t know why I’ve had hyperemesis with all three pregnancies or why Mom had a stroke or why Dad had a heart attack. We don’t know why some people develop cancer and others don’t.
But at least we know what those things are. When your child dies and you don’t have any idea as to why, it’s a very very scary thing. You think, what if it’s something genetic? Should I have more children? What’s the risk of it happening to them? Did I do something during my pregnancy that lead to a developmental delay? Because if so, then in my next one I’ll know not to do it. Is it something that could be construed as medical malpractice because, if so, I don’t want it to happen to another parent.
Pete pointed out that as far as our friends who have children with disabilities go, they might not know why their child has that disability, but at least they know what that disability is. It has a name. Death is very, very different.
Even “SIDS” would be an answer. We don’t know what “SIDS” is, but it’s better than saying, “I don’t know” when someone asks you why your infant passed away. (Okay, so we say “SIDS” because it’s the best we have, so far.)
I brought this up on the support group’s wall and everyone agreed with me and someone pointed out that this is something that other people are just not going to understand unless they’ve been through it. One person said that whenever they complained about not having the autopsy report back yet they usually got a speech about “getting closure” and how they need to “move on into the acceptance stage of grief” and how that frustrated them. A lot of people commented and said that for parents who don’t know why their children died (yet) it’s especially difficult because they want to have more children but until they have an answer as to what killed their last one they’re afraid to.
I have another friend who tells me that they know “in their heart” that it was SIDS and really don’t think that it could be anything else. This confuses me, too. While I agree that’s probably what it was, why are they so hell-bent on sticking to that theory? Do they think that it’s going to somehow hurt me or affect me if it was something else? SIDS is not the “best” answer. Even if it was a seizure, I could deal with that. If we had taken Toby to the doctor the week before he died it still would have been a week or two before someone would have seen him and diagnosed him so really we did all we could.
I know that some people have issues with me asking questions, looking for answers, and doing research but I don’t understand that. If EVERYONE just accepted death as “meant to be” and figured that the cause didn’t matter because the outcome is still the same then we wouldn’t have the cures to diseases that we have now. We would still be dying of plagues, TB, consumption, and loads of other things that we’ve managed to curtail over the years. And just look at all the research that goes to heart disease and cancer.
Is it so different when a scientist looks for answers? Is it different because I’m a grieving parent and therefore my curiosity is just a stage of grief? When I was in college and we were studying water quality in Letcher County and how it might relate to health problems, that was considered a scientific study and we were given funding for it. We tried to find links between water quality and some of the health problems that existed in the community. But as a parent who lost an infant, if I try to find answers and links then I’m just not accepting his death.
Maybe I don’t want it to happen to someone else. Maybe I don’t want it to happen to my future child. I don’t see a problem in that.
It all seems so box-like. Even the stages of grief feel planned out. And if you feel something then someone says, “Oh, well, you must be in the depression stage” or “You must be going through anger.” If you get mad then it's "Oh, well, she lost her child"...well, maybe I'm just mad. Why does it all have to be categorized like that? Can’t you just feel?