I’m starting to think that I’m cycling through the stages of grief again, but this time on a much larger scale than the first time. I feel like I am stuck on repeat, but in a constant state of turbulence...constant repetition of upside down and backwards denial, anger, depression and acceptance. Whatever this is, it’s something that has been brewing for the last month or two and it is finally starting to take its toll. My days are either completely on or completely off - I am either productive beyond all expectations, or don’t accomplish a damn thing from the time my feet hit the floor until the time my head hits the pillow. I have lost all tolerance – for everything. My lack of tolerance for the people and things around me is actually pretty astounding. I know that much of this is all because I am exhausted from the blistering pace that I have been running for 4 ½ months at work, and some of it is compliments of surging hormones. Regardless of why it is happening, I don’t like it, and I hope it passes before I come completely unglued on the wrong person.
While I have been wrapped up in work and in this crazy, warped grief cycle, I have again gotten out of my regular internet routine. I haven’t been returning emails. I have breezed over only a handful of blog posts, which breeds a certain form of guilt. I have not been to BCC to check out any of the boards that I belong to, which, in some ways has turned out to be a relatively good thing. I have not had any desire to publish new posts on my blogs. Some of this is generally okay with me, for various reasons, but nonetheless it is somewhat perplexing and frustrating.
On top of this, I have been feeling a new frustration recently that seems to be the result of continually rehashing my pregnancy with Gracie over and over again. I have been replaying everything over the last few weeks, and at one point I had a brand new thought – How differently might things have ended if we had elected to undergo amniocentesis that confirmed presence of T21? I have maintained since Gracie’s death that if things had gone differently at certain points during our pregnancy, there is an outside chance that Gracie would still be here; but this new question/thought takes things beyond that statement and into a whole new thought process that goes beyond me, beyond Jeff, beyond Gracie and beyond our OB care providers.
After learning that the probability of Gracie having Down Syndrome was 1:47, we declined the amniocentesis since we knew that we were not going to terminate the pregnancy, regardless of the outcome. It was a decision that we discussed with our providers at later appointments, and it was a decision that they seemed to support. After that point there was never any mention of Down Syndrome again until the moment that Gracie was born. So, for essentially 2/3 of my pregnancy, Down Syndrome was out of sight, out of mind. This is where my new thought really kicks in. I keep wondering why there was no further discussion after we declined the amnio and explained why we were declining. Why weren’t we told that certain chromosomal abnormalities, such as trisomy defects, are linked to small placentas, which in turn can cause IUGR? Why wasn’t I monitored as if a positive T21 diagnosis had been made? Why didn’t we have at least one ultrasound doppler study to look at blood flow through the cord to ensure that there was no placental insufficiency? Was there anything in my chart to get the attention of those reading it ( who hadn’t dealt with our increased risk) and make them aware of the probability/possibility of T21? If my chart had been flagged as ‘probable/possible T21’, would we have gotten the response that we got when I questioned Gracie’s apparent lack of growth at 35 weeks? Although we really did not want extra unnecessary ultrasound exams at the end of the pregnancy, if someone had explained the increased risk for small placenta and IUGR, we would have likely submitted to a few more just to monitor growth, especially after she started losing ground. Why, now - during this pregnancy, will all of these precautions be taken - even if there are no indicators pointing to increased risk of T21???
I still place no blame on our providers, but I know that anyone who reads this post could easily interpret it as finger pointing. That’s not really it. It’s a larger thought process. How many OB providers use the practice of ‘out of sight, out of mind’ when someone with a high probability of T21 declines an amnio and has no obvious markers for T21 during subsequent ultrasounds? How many others have decided to forego the amnio knowing that they would accept the baby regardless of a diagnosis, and then had a similar situation sneak up on them? The entire thought process makes me want to personally distribute a copy of this article to every OB/GYN and midwife in North America ...