Yet Another Rant About Western Medical and Canadian Public Health Care Bureaucracy

On Thursday afternoon we had a follow-up detailed anatomy (anomaly) scan to last Wednesday’s emergency ultrasound intended to assess whether Azulito/a had any visible anatomical abnormalities that would confirm (or refute) the positive test result for alpha-fetoprotein I received last week Tuesday, indicating elevated risk of Spina Bifida or Anencephaly (or other open neural tube defect).

Thursday’s ultrasound was performed by Mary Poppins. Her pleasant bubbly nature is the only kind thing I can say about the entire experience. She started by asking me if I knew why I was there. Suppressing an urge to plant a fist in her throat and rip out a handful of the hair carefully tousled and tied atop her head, I responded with “You have not read my chart, have you?” as I heard the LP shuffle his feet in the chair at the foot of the examination table on which I was lying.

She assured me she had viewed my last ultrasound but that she liked “to hear from patients”. Trying not to roll my eyes and pinning my fists beneath me so as to avoid risk of assault charges, I recited in 7 seconds or less why we were there on Thursday and why we’d been there the week before. I did not get into the fact that this was pregnancy number 10 for us and that the LP and I suffer from what would surely be diagnosed as some form of ultrasound- and pregnancy-loss-induced post-traumatic stress disorder and could be just get on with it already and let me see what the hell she was looking at (she refused to let me see the screen until the end when I got to see the cutesy baby stuff that people who only get one or two ultrasounds always want to see).

I was upset, scared and angry. In my gut I immediately knew things were not going to go well before she even began the ultrasound. Things ended much worse than I could have expected. She refused to let us talk to the doctor, saying he was busy and needed time to compare last week’s report and images to this week’s. She said we had to wait for him to do that, write up his report, send it to our doctor and make time to speak with my doctor once she received the report.

My doctor is still off work sick (this is two weeks now – did she have a bloody breakdown or catch an infectious disease? For heaven’s sake already!). We went to her office immediately after being rebuffed at the ultrasound clinic. First available appointment with my (about to be fired) doctor is February 12, 2015. Perfect. Universe, are you kidding me?

As a child, I loved Mary Poppins. On Thursday, I wanted to pummel her.

To keep what could otherwise be a long story very short, we learned…. Well…. Nothing. Not entirely true. We learned that Azulito/a has adorable hands and feet. How delightful. Is my outrage and anxiety projecting itself between the lines here? I ask because it is leaping up like bile from my gut and lapping at the back of my teeth as I type this.

Don’t get me wrong, Azulito/a. I love your feet. And your hands. And your little button nose. I love everything about you and am doing everything I can to bring you safely into this world. But what I really wanted to know – what the LP and I really needed to hear was that at 18 weeks the doctor – not Mary Poppins – still could not see any abnormalities consistent with a finding of Spina Bifida or other open neural tube defect.

Mary Poppins not only refused to get the doctor for us to speak with. She refused to tell us how big Azulito/a was measuring so we would be able to assess if the growth was on track from last week in a desperate measure to draw assurance from anything she had scanned in the follow-up that the doctor had recommended. Her secrecy triggered many prior ultrasound experiences in which technicians have either acted evasive and refused to tell me or, when the LP has been with me, to tell us anything or the times when the technicians have outright lied to me (the best one being “I just need a moment to find the heartbeat we saw last time”. Yeah, that never actually happened and I knew the baby had died all the while she kept telling me that lie.)

The LP said “if she’d seen something she would have gotten the doctor” at first but I pointed out that with all of the complications we had with the Miracle Toddler’s pregnancy, not once did the technician ever let on a single issue – we were always blind-sided by the report when my doctor would go over it with me or us later. Upon recalling that, his anxiety level shot up, too. This was very different than last week when they were eager to comply with our (in my view, completely reasonable) request to speak to the doctor and the doctor was candid and forthright in saying the scan was earlier than they’d like, technically difficult and not perfect but did not reveal any abnormalities.

I want to believe everything is going to be okay or at least not fatal or near-disastrous. I truly do. But nothing about what happened on Thursday or what’s been going on in my mind since then is making that easy.

I am no stranger to the bureaucracy of our public health care system. I defended doctors in this regime against litigation and complaints for several years. I have hired and worked with doctors, nurses, others in the Western medical field as experts. I get the CYA protocol that underscores every move every professional makes. And that only makes me more anxious. Because everyone likes to share good news. The lips get sealed when the news is less revelatory.

In short, I am scared. And deeply enraged by the inhumanity of the system in which we are forced – because there is no alternative to the public health system where we live – to accept “care”. If I did not need these people as much as I do right now, I would be writing a scathing letter of complaint to the Colleges of each of the medical professionals by whom I feel utterly and repeatedly let down right now. But for now, that is not in the cards. I hope in time good news will overshadow the bad and I will let go of this outrage, hurt, silence, terror and anxiety and those complaints will go by the wayside.

I know, making them might improve things for others. That’s what my mother would say were she still alive. But I don’t need to be a crusader here. I am barely making it through each day when the stress levels are as high as they have been lately. Besides, I am not convinced another complaint or two or twenty-seven would make one lick of difference in the long run. Experience has taught me that is just not how those complaints work. The doctors and others who get them suffer momentarily, but their Colleges do nothing or next to nothing. And systemically, nothing changes.

And on that sour note, I end the hostile portion of this post.

Now on to something a little sweeter. A note to you, our dear baby. We love you, Azulito/a. Please be okay.

What is next? We attend the Perinatology Clinic next Wednesday, February 4th, for a Level II Ultrasound and to speak with one of the perinatologists there (I will not leave until that happens) about the positive screen, elevated aFP and whether that ultrasound and the ones this and last week suggest any neural tube problems. If so they will offer us amniocentesis. If not I hope this ends our current foray into yet another experience I would not wish on any expectant parent.

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32 thoughts on “Yet Another Rant About Western Medical and Canadian Public Health Care Bureaucracy

  1. Why do they even bother ultrasounding you if they can’t relay the findings via the doctor asap? Ugh. I am so frustrated for you. I know the feeling of being on the other side of the screen, trying to respect the limitations in their scope of practice, but good God, it is totally inhumane to put someone through the on-the-edge-of-your-seat-about-to-have-a-nervous-breakdown phase for a prolonged period of time. I still remember how closed and expressionless the ultrasound technician was after she realized that there was no heartbeat at 8 weeks. She went from joking around, being all bubbly, to very focused and not saying anything. I really do hope Azulito/a is fine, and that they figure you can wait for good news.

  2. I personally believe it should be a doctor performing such a scan. I know you are terrified and feeling like shit, but your writing does make me laugh. And laughter is appreciated ever so much when I’m experiencing my own kind of fear right now. Sending much love to you, as always, dear friend.

  3. I can only say that I am sorry that this is such a trial. I pray it will be well worth it all in the end when baby A is in your arms. Tomorrow is our full moon circle and we will include you in the blessing. You have more support in this than you realize. 💙

  4. Ugh. I was waiting to see this update and am so sorry that you had such a bad experience. I know all too well how it feels to be in your shoes right now. Although my circumstances aren’t exactly the same as yours, it was at my 19 week anatomy scan that our first baby’s abnormality (no kidneys) was discovered, and at our 13 week ultrasound that our second baby’s abnormally (anencephaly) was discovered. And honestly, to this day I have a lot of irrational rage directed towards each of the ultrasound technicians that performed those scans. I sat there for an hour with each of them and they never told me anything. The only saving grace for them was that I met with my OB/GYN immediately after each ultrasound to get the results, as the ultrasounds were performed at my doctor’s office. But the anger I feel towards them is part of the reason why I decided to switch doctors and hospitals. I know they aren’t supposed to tell you things, but seriously, they sat there with me scanning and talking like nothing was wrong. After each terrible scan happened my OB/GYN insisted that I meet with MFM the very next day. I can remember how anxious I was waiting 24 hours, never mind having to wait one or two weeks. I don’t know how you are doing it.
    I am hoping that everything is fine and that good/better news will be coming your way. Wishing you a lot of strength during the next few days and weeks. Hugs.

  5. I am so incredibly upset for you, and for anyone who is put through this. I simply cannot understand why in the world the doctor wouldn’t talk to you afterwards, and I understand just how terrifying this wait must be given your history of bad/heartbreaking/miserable/tortuous ultrasounds!
    I am glad you are going to demand to speak to a doctor at your appointment next week. I cannot help but be reminded of our 3rd loss when the doctor refusing to speak with us the morning of our TFMR. The whole thing started out poorly when the tech refused to let Mr. MPB join me in the room – that lasted all of about 10 seconds when I told her this is a family decision that we make together, and he WILL be coming with me. Then, I demanded he speak with us, the tech was opposed, eventually I won when I refused to leave the room (I needed to know the FHR and growth before I could terminate). And then it turned out the doctor was an absolute $!%@ jerk when we spoke with him as proceeded to tell us that even with a FHR of 58 that the baby may survive – he clearly had not read my past ultrasounds or my chart that indicated a septic infection. I did eventually put a complain in with the ultrasound department at the hospital, but sadly I know nothing will change because of that complaint. All of this is just to say that I understand your decision to demand answers next week, and I also understand your decision not to pursue submitting a complaint right now.
    Love to you sweetheart. I wish I could take away all your pain and your worry right now. I wish I could do something to make this a little bit easier for you. I wish…

    • Yes, in recalling your experiences with ultrasound on Thursday it reinforced my fear that silence and evasion does not mean the ultimate news will be good or even innocuous. These are not routine ultrasounds and saying nothing should never be an option. I am so sorry for the suffering you endured in each of your losses; the time you got sepsis haunts me every time I think about it. I can only imagine how it has shaped your experience of our medical system.

      I wish, too… Thank you.

  6. This is so infuriating. I know how dreadful and nerve racking scans can be, but the secrecy of your technician and making you wait even longer for the results is just unacceptable. I read this post with my heart in my mouth and I suspect its going to stay there until your next update. I am hoping against hope that everything is going to turn out beautifully for you. I know, through all of the anxiety you are feeling that it may be hard to be positive at the moment so I will be positive for you – it will all be ok x

  7. I’m so sorry you are going through all this. I can relate to the fear and the unknown. And how awful that they keep you waiting so long. I can’t imagine. Praying for a good report and that a miracle happens and you can talk to the doctor soon! xo

    • Yes,Perinatologist = MFM. My appt. with the Perinatology Clinic is booked for 15 days after I was first given the positive blood screen result although my doctor had that result the previous week so if she had acted on it and called me in right away we would likely already have seen someone.

      This feels way worse than any 2WW I have had. And in 5 years of this journey including our efforts to have the MT I have survived a lot of two week waits. 😉 Thank you for your compassion.

  8. What I want to say after reading this is not appropriate. So, for now, I’m just going to say that I’m sorry this is happening and I’m sorry you have to wait. You and Azulito/a are continually in my thoughts and I am sending much love to you! ❤

  9. I’m with mamaetmaman with this one. What assholes to withhold information from a pregnant mother. I’m so sorry your going through all of this and that the shit storm keeps coming at you. I really am. Xoxox

  10. Just thinking of you and praying for you. My last u/s experience which led to my tfmr was a wretched one that still haunts me. At least, those 8 minutes still haunt me, when I waited for the tech to bring back the doctor….. I even noted to my new RE that those minutes where I figured out that something was wrong are the source of an even more intense scan-related PTSD that I can’t shake. But in retrospect, my last hospital’s genetics team was competent…. and kind…. and everything that your doctor’s aren’t. It makes me ill to read your experiences. I am going to continue to hold out hope that you are dealing with completely incompetent assholes who put you through unnecessary worry and trauma when in fact everything is fine.

    • I hope that your hope proves true. You’re right, it is unbelievable what a difference compassion and competence can make. I am so sorry for the agony you have endured and the open wounds it has left. I truly appreciate your understanding and support.

  11. Argh how unbelievably frustrating, annoying, and infuriating! Reading your post has made me angry for you. Good luck for today and I hope the results are better than you could ever imagine. xx

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