I keep going back to the last non-stress test I had 2 days before he died. It was a Monday morning, and the doctor I was scheduled to see had an emergency at the hospital and wasn't available. The nurse went ahead and hooked me up to the NST machine and said one of the other doctors would be in to check on me when they could. The office was packed with patients.
I remember thinking that he wasn't responding like usual to the bit of caffeine and food I had immediately prior to the NST (they told me to do this so that he would move around more for the test). At the previous NST four days prior to that, the minute the soda hit my throat he practically started doing cartwheels in my belly. It never took much caffeine or food to get him moving - he was always a very active baby from the beginning. His movements had definitely decreased that morning. I chalked it up to the possibility that he was still tired, as I was, and that it was probably nothing to worry about. His heart rate was also 20-30 bpm slower than it had been four days prior, and I made a mental note to ask the doctor about it when he came in.
About 10 minutes into the test, the machine ran out of paper and started beeping really loudly. His heart rate was still registering on the monitor where I could see it, the record of it just wasn't printing out. When the machine started that horrible beeping, he started moving a little more and I noticed that his heart rate became what I would call erratic (at least it seemed that way to me). It would go from 140bpm to 170bpm and then it would go to 120bpm and then for several periods of 5-10 seconds, it went to zero.
The nurse came in the room and was changing the paper in the machine when I asked her what was going on with his heart rate fluctuations. She said that the beeping probably woke the baby up and that he changed positions to one that was harder for the monitor to pick up. She said it happened all the time, no big deal. She had me stand up and reposition the 2 sensors on my belly. After that, the paper started printing his heart rates again.
A doctor I had never met before came in shortly after. I told him about the paper running out and about the erratic heart beats that were showing up on the screen. I told him that I was a little miffed about the decreased movements, because he was always so active (especially after a little caffeine). The doctor told me that babies heart rates often times fluctuate, and that he agreed with the nurse that the lapses in heart beats were probably just a malfunction of the sensors not being able to pick it up. And that as babies get bigger, their movements decrease - I needed to not worry. But just to be safe, he agreed to leave me on an 15 minutes. His heart rate continued to go up and down - it would fluctuate from 100-180bpm, and then bottom out to zero for a few seconds before jumping back up again. The last test four days prior, his heart rate stayed at a stable rate of 150 -160bpm range throughout the entire 30 minute testing. And it never lapsed to anything less than that - and definitely not to zero. The doctor kept saying that the baby was changing positions, and that is why the machine wasn't picking it up. But I knew that this wasn't the case, because I wasn't feeling him change positions.
Had the doctor looked at my chart, he would have seen the marked decrease in fetal movements during that test from the one I had prior that. He would have seen the difference in heart rates. He told me that all this was normal and that babies don't always move around the same amount every days. He was busy with all the other patients that he was having to see in addition to his own patients. He signed off on the NST paper and told me that everything looked fine and to come back on Thursday to see my regular doctor.
I trusted him. He was the doctor, after all. He knew what to look for and he had probably done thousands of these tests. If he was telling me that everything was normal, then surely I had nothing to worry about. I was still innocent in that moment. I still had 100% confidence in my care providers and felt that I was in the home stretch. My pregnancy had been such an absolute breeze compared to my last one.
That night, laying in bed with my husband, I had a (very) sudden and unshakable sense of dread and fear. I can only describe as a darkness, a void, a hopelessness that oozed over me. I told my husband about this unexplained feeling and that I hoped my postpartum depression wasn't coming early. I didn't think it was related to Nicolai. In fact, laying in bed, at that very moment, he was wiggling around under my fingertips. I tried to shake the feeling. I convinced myself that it was just pregnancy hormone fluctuation and that I should just go to sleep and stop trying to over analyze it. And so, after about 15 minutes, I drifted into a restless sleep.
In clinical settings, it is a common phenomena for people to sometimes gain a sense that something very bad is about to happen. It is not a panic attack, as often the person experiencing it is very calm, but knows that something bad is happening. The Mayo Clinic even lists this 'impending sense of doom' as notable sign for myocardial infarction (heart attack). This phenomena is sometimes called, "The eye of Casandra," referring to the Greek heiress of Troy who was able to sense the worst before it happened. It is an occurrence that paramedics report in the field. Parapsychology teaches us that we all have a built in warning system that stems from our evolutionary roots. Often referred to as our 'lizard brain,' this part of us is responsible for our instincts. The famous analytical psychologist, Carl Jung, coined this the "collective unconscious."
Charles Darwin described instincts as being unconscious; that is, they are not the result of conscious deliberation and are not learned behavior. Many instincts are inherited virtually unchanged from parents to offspring. He noted that 'pointers' (dogs that are used to hunt waterfowl) do not need to be trained in how to “point” at their target. On the contrary, they do need to be trained to hold still when a gun is fired, and to not maul a duck if it is shot and lands nearby. “Pointing” is an instinct.
We all have these inherent instincts that alert us to impending danger. It is just too often that we do not listen or adhere to them. Our conscious brain uses reason and past learning experiences to calm our 'lizard brain' down. Sigmund Freud described this mental battle as a struggle of power between two of our three ego states, the 'id' and the 'super-ego'.
The id is unconscious, instinctual. It is the dark, inaccessible part of our personality - the construction of our neurotic symptoms. We approach the id with analogies: we call it a chaos, a cauldron full of seething excitations. It is filled with energy reaching from the instincts, but has no organization, produces no collective will, but only a striving to bring about the satisfaction of instinctual needs. It is the only component of personality that is present from birth." (If you know me in the real world, you will know that my id is dominant ego-state.)
The super-ego is in constant contradiction with the id. It is the part of our unconscious that is formed through internalization of moral standards, parental expectations as a child, and society's norms. It helps us 'fit in' to society by acting in socially acceptable ways. The super-ego criticizes and prohibits our instinctual drives, fantasies, feelings, and actions. It is the part of our unconscious that punishes us with feelings of guilt and self doubt.
My lizard brain, my id, my collective unconscious, my 'sixth sense,' - it knew that something terrible was about to happen. It knew at the doctor's office during the non-stress test. My super-ego convinced me to doubt myself. It paraded all the statistics and research, all the reasons that my medical providers knew best. It made me self-conscious, it persuaded me not to be the high-maintenance patient and insist that something was wrong when the doctor was telling me everything was fine. Later that night, my id was screaming at me, desperately, in any attempt to alert me of impending danger that lay ahead. My dark super-ego waited quietly before sneaking up and attacking it, rendering it unconscious and unable to keep me awake with the fear of the reality that was about to unfold.

Our stories bare incredible similarities. I too had sense something was wrong. The u/s a week b/f she had decreased movement. Then a week later no movement. I don't know why they didn't take it seriously!
ReplyDeleteAlyvia, I have lost so much faith in doctors. I feel like there were so many warning signs that they should have seen - decreased movement, decreased heart rate, etc. It kills me to know that his death could have probably been prevented had they spent a little more time monitoring me.
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ReplyDeleteOh, Lisa, how do we stop going over and over those moments, reliving the regrets and wish-hads and what-ifs? There is so much trust involved in pregnancy and childbirth anyway... why can't we trust our doctors more? Why hasn't medicine figured out all about stillbirth yet?
ReplyDeleteI didn't know the sense of doom was a real, documented thing. I like the name "eye of Cassandra" so much, it's so vivid. Thank you for teaching me about these things.
Remember you and your little Nicolai and holding you in the Light,
Burning Eye
My dear, I read your blog and I'm now a follower. I cannot express the words of sorrow I feel for you as a fellow baby loss mom to your precious Joseph. I wish I had a way to not obsess over every second of evey day leading up to my Nicolai's death. It consumes every moment of my day and I cannot concentrate on anything else but finding answers. I am broken inside in a way that I am unsure can be fixed. Thank you for your thoughts.
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