One of the more difficult aspects of dealing with Drake's death has been the unknown. His experience of having heart failure in utero was so rare- none of MANY doctors we met with had seen anything like it before, nor could they explain why it happened. The fatality of his diagnosis was one thing they all agreed on, it was clear our baby would not live long without a miracle. Three short days we had him. After he passed away there were more blood draws, genetics tests ordered, and a full autopsy. Still, we were left with no clear answer as to why this happened.
That has been hard for me to sit with. Medicine can tell us SO much these days. How is it that our babe's story remained a complete mystery? Most reports and doctors explained things as just a "fluke". Therefore leaving me to worry.... well, if it was just a fluke, who says a fluke can't happen again? I know this is cynical, but it is where my mind has gone. As a grieving mother, who was hit totally out of left field with an unexplainable condition that caused my Son's death- I have been left to wonder. One thing I learned for sure, we have no control, and God's plans do not always make sense to us. That has been where my heart has been stuck, bracing myself to face a potential future of losing other children- because you just never know.
I have also been left to struggle with the tempting thoughts that I must've done something myself to cause this. I was always extremely honest with doctors about anything I had ingested or any activity I took part in during pregnancy and they assured me I had done nothing wrong. I innately know I took good care of myself during my pregnancy, but when something goes wrong, I think it is a natural response for an expectant mother to begin questioning themselves. Did I accidentally eat some unpasteurized cheese? What about the fact that we found out a little late and I had been on some medications that were not proven to be totally safe during pregnancy? Or is it because I took (doctor approved) sleeping meds to help with my pregnancy insomnia? Was that Herbal Supplement I took for pregnancy really safe? That glass of wine on Thanksgiving? (Shock, yes me the social worker drank a glass of wine while pregnant.... the doctor told me an occasional glass was harmless,I realize this is a highly controversial subject and worthy of it's own blog post, but we'll leave it at that for now). So then comes my overanalyzing of what other people must think of me. As in "They must think I did something CRAZY during my pregnancy" or "They must be judging me for having an occasional 1/2 caf. latte while I was pregnant" or "What did they mean by that question?" etc. etc. Not a fun place to be in. Even as I write this I second guess sharing so honestly, but I guess candidness is what I've strived to be all about- so there you have it! I also know for a fact a good many of my trusted friends would tell me I'm silly for even worrying about this, but I can get carried away with my conscientiousness :)
Recently, I have finally found some relief from this struggle. Thanks to a doctor, we'll call him Dr. S, who FINALLY explained things in a different light.
Initially when we received the results from Drake's genetic testing, it was explained to us that they found one tiny tiny small thing, "a slight duplication on the long arm of chromosome 5 of uncertain clinical significance". The geneticists told us that there was no reason to think this was the cause of his heart failure and was likely not linked to anything, nor something we were genetically carrying. Which was good news, but still not an answer.
At a recent appointment with Dr. S, our Perinatologist (high risk pregnancy doctor) we reviewed these results again. His take was that if the ONLY thing anyone could find was this small genetic mutation, then it was likely that was the cause. Dr. S explained that the geneticists would not explain it that way, because there probably is no research to base it on, and no other documented cases such as Drakes. However, if you look at it logically, by process of elimination- there is no other reason, so the genetic mutation probably is linked to the heart failure. As he said, "Doctors are like chefs.... it's like we all know how to make meat loaf, but we all have a slightly different opinion of what goes into the meatloaf and how to prepare it in the best fashion. We all went to culinary school, but each school trains you to think a slightly different way. Not better or worse, just different." My first reaction on hearing this was panic. My immediate next question was, "So does that mean if it was genetic, that it could likely happen again? The geneticists said it would be very rare for it to happen again, is that true?" Dr. S's answer calmly reassured me, "No, this kind of thing is totally random. It's like one tiny little thread just snapped for some random reason early on in development. Sometimes it just happens, but it's rare and the outcomes are all different." He went onto explain, "The odds are like being struck by lightning.... and we all know lightning doesn't strike twice."
So there you have it. Whether or not all this makes sense to you, it made sense to me! It reassured me that there was some kind of physiological cause and it wasn't some completely mysterious thing..... or some kind of spoiled lunch meat I consumed while pregnant :)