Complaint of the poor care of severe pre-eclampsia (PE)
I was admitted due to severe pre-eclampsia on 09/2020. The condition progressed but the progress was not recognized until I was eventually admitted to high-dependency care. My son was delivered by an insufficiently anesthesized caesarean section on 10/2020. The current complaint focuses on the missed progress of the pre-eclampsia, more specifically:
Failure to detect PE progression due to frequent changes in care providers;
Major communication failures, including discrepancies between what was explained to me and what was recorded in the journal, as well as the failure to properly record signs of disease progression;
Poor behaviour, which include lack of informed consent, dismissal of my concerns on the disease progression and denied request for elective caesarean, and downright abusive behaviour during the labour induction. I have worked in labour and delivery as a pediatrician in another European country and would never treat a mother in the manner I was treated. It breaks my heart that the Ullevål obstetricians can be this dismissive towards any woman, let alone their colleague.
I was admitted for inpatient observation on Monday, H36+4 due to clinically asymptomatic proteinuria and high blood pressure. During our discussion, the admitting physician (Dr. 1) diagnosed moderate PE and advised labour induction at H37+0. I agreed with this plan. In her notes, she recorded the plan to admit me for observation and evaluation of labour induction at H37.
On Tuesday (H36+5) the second physician (Dr. 2) presented a plan for outpatient observation and labour induction at H37+4 the earliest, or possibly waiting until H38. I had not seen Dr. 1’s notes and was confused by this change of events. I however agreed, as I was keen to continue the pregnancy and go into labour spontaneously.
My blood pressure did not stabilize and I developed mild but progressive clinical symptoms, including headache, visual disturbances and shortness of breath that I reported to the midwifes. Dr. 2 decided to keep me inpatient but held onto her plan on inducing me at H37+4 the earliest. I did not contest her decision, as I wanted to be a good patient and did not consider myself an expert in the matter. The disease progression, however, made me increasingly anxious and I became very afraid of the labour induction. I was concerned that I would be in massive labour pain with a serious progressive illness and would need assisted delivery. During my work, I have witnessed several ventouse extractions that were humiliating to the woman and ended in fetal distress, severe tearing, emergency caesarean section and stays in neonatal intensive care. I discussed this with one of the senior midwifes who confirmed that these outcomes were indeed possible and even likely. I started crying and the midwife tried to comfort me by letting my bewildered partner stay longer than what was allowed by the COVID restrictions.
On Friday (H37+1), a third physician (Dr. 3) evaluated my situation, and decided to move the induction to the next day at H37+1. At that point I was very concerned about the progressive disease and concluded that I wanted a caesarean to halt the progress and avoid the complications described above. I however lacked the confidence to forcefully demand this. As the day progressed, I became nauseous and felt a weird exhaustion akin to a severe viral infection. I reported the new symptoms to the midwife (I call her Elisa) and asked her whether she thought it was possible to perform an elective caesarean. She became angry and told me that the unit never performs elective caesareans in these cases. I was devastated and contacted my partner to arrange a caesarean in a private hospital in the United Kindom. This was obviously impossible given my advanced disease and the COVID-19 pandemic.
On Saturday at H37+2, the scheduled day of the induction, I was terrified to be induced with my progressive symptoms. I was so fearful that I had not slept in multiple nights and had finally taken Zopiclone as a sleeping aid. We had a long discussion with Dr. 3 and Elisa during which I cried hysterically. Dr. 3 presented me my options as though there were no alternatives: get induced today, or get induced tomorrow. We never discussed the option of elective caesarean and I was too afraid to bring this up because of the way Elisa had reacted in the previous evening. We also did not discuss the plan to deliver the baby by ventouse extraction (a standard procedure in severe PE) which I would not and will never consent because of what I have witnessed and again I was too afraid to bring this up. When I - mentally broken and completely overridden by these two women - agreed to be induced on that day, I had not given an informed consent the way I understand it as a clinician. I was terrified that if rose against the women, I would be labelled as difficult and left neglected without pain relief to labour on my own, as per pandemic restrictions.
On Saturday evening, after the placement of the foley catether, my symptoms progressed further: I was exhausted, intensely nauseous, could not stand bright lights, and had a headache. A new midwife alerted Dr. 3, who concluded that I was reacting to the foley catether. She did not come to examine me personally even though she was present in the ward. In the coming days, these symptoms fluctuated and did periodically abate; during this time I tried to eat and be as mobile as possible to prevent embolism. I probably looked better than I was.
On Sunday, the fourth doctor rounded the ward. Lying in bed, I explained to her that I felt very nauseous and as though I had influenza. She announced that the labour needed to start and – without forewarning or asking for consent - proceeded to pull out my covers and pants. She started painfully yanking the foley catether that was placed in my uterus and commanded me to stand up. She continued pulling, explaining that the pull would help with the labour progress. I asked her to stop, which she ignored. The episode felt sexually abusive and humiliating. I was started on misoprostol tablets as per protocol, and Elisa cared for me during the day. She encouraged me to see positively for the upcoming (vaginal) birth and wanted me to steer my thoughts away from the caesarean section. Although she meant well, her comments made me feel entirely misunderstood and unheard. I cried multiple times alone in my room where I mostly lied bedbound, nauseous, exhausted and breathless. I could not distract myself as I was so light sensitive that screen time or reading was not possible. I hated my pregnancy and my unborn son – this hate persisted almost a year after his birth and destroyed my ability to enjoy and bond with him. I tried not to think about the upcoming disaster – ventouse or caesarean, or all their horrific combinations that I had witnessed – that would unravel the next day. My partner could only support me for an hour as per pandemic restrictions, and I had difficulty calling for support by phone because of my light sensitivity and nausea.
On Sunday evening, the misoprostol tablets induced uterine contractions, and after an episode of fetal heart rate deceleration I was moved to labour and delivery for continuous monitoring. When the night turned to Monday, the contractions had stopped and did not recur despite artificial rupture of membranes in the morning. As the day progressed towards the afternoon, the combination of exhaustion, nausea and light sensitivity escalated to such heights that I started panicking and became restless. This went unnoticed for a period, as my partner was not with me (pandemic restrictions) and I did not realize that I should call for help. When the staff did take notice, they took this as a preceding eclampsia and moved me to high-dependency care where I was stabilized with iv magnesium. During the urinary catheter insertion, the seventh doctor that I met in a row announced to the room that his (male) colleague didn’t find it necessary to administer lidocaine gel to women when he catheterized them because the female urethras are so short. Lying in the middle of all wires, naked and confused, this comment felt utterly degrading and humiliating, and I felt ashamed of my feminine pregnant body. When Dr 7 (without consulting me or discussing about my options) asked the midwife initiate the oxytocin stimulation, I felt like an exhausted animal who was given a final whipping to perform the Ultimate Vaginal Delivery. I was absolutely opposed to the stimulation and wanted to end the attempt by a caesarean section but this was never discussed about and I was too weak to demand ending the attempt. The stimulation lasted for ~6 hours and ended when my son went into distress. The staff decided to perform an emergency caesarean, during which the epidural failed to anesthetize part of the tissues. I was given intravenous opiates which did not diminish the pain but caused a paralysis of some sort. This reaction is not recorded in the notes accessible via HelseNorge and after discussing with Dr 8, who later reviewed the case failings, I filed a separate serious adverse event report of this incident to the Norwegian Board of Health Supervision.
After the caesarean delivery, Dr. 7 has written several additional journal notes. However, apart from Tuesday morning when he briefly announced from the doorframe that I could move from high-dependency care to the postnatal ward, he never visited me personally or explained the rationale for administering the iv oxytocin – I was confused as to why this was done without my consent, without no considerable labour progress after AROM and misoprostol, when I was so poorly and there was an event of deceleration (of unknown significance to me) in the CTG from the previous day. Neither did Dr. 7 or the anaesthesiologist ever apologize for the painful caesarean. Several months later in 12/2020, the gynecology professor at Ullevål kindly asked Dr. 8 to go through this part of my notes with me and although I now understand the rationale between the decisions, I still do not accept them.
I did get excellent care from the nursing staff during my time in high dependency/recovery between Monday and Tuesday, and the midwife that cared for me during this time was brilliant. I also found the other midwifes as professional and genuinely caring (including Elisa, whose behaviour reflects more of poor training than malice). I was also impressed by Dr. 8’s bedside manners and work ethic, and he left a lasting impression as a clinician whose behaviour I want to model in my own care interactions. There were several other good physician interactions, and I believe that all the (female) physicians involved in my care would consider themselves as nice and emphathetic. Being emphathetic, however, does not justify coercive behaviour, unconsented procedures or ignorance to act on PE progression.
When I was moved in the postnatal ward, there were several instances that reflected overt disorganization. I was not instructed on how to move around or care for my caesarean wound, or how I should lift or care my baby (I had no help from my partner due to the pandemic restrictions). I did not get any oral or written post-surgery home-care instructions. Nobody indicated that my sons’ birth had been traumatic or provided emotional support, even though I told one of the midwifes that he didn’t feel like my child. My “birth” review at the ward did not handle my birth but baby care, and when hearing about my background, the midwife (who otherwise was very lovely and helpful) suggested that we drop the discussion entirely as I’m already an expert with babies.
On one (unknown) day at the postnatal ward, my partner and I started arguing and eventually desperately, hysterically crying true to all the trauma we had endured. In the middle of our meltdown, a baby carer entered the room and coldly announced that I should move to a shared room within 30 minutes, as someone else needed my private room. At that point I decided to discharge myself and concluded that I would never, ever trust my care in the hands of anyone else than myself. The midwifes didn’t let me out and I ended up staying in my private room. After leaving the hospital, I did not go to any postpartum GP appointments as I was so disillusioned and angry (I did see my excellent and supportive midwife at the helsestasjon though).
As a result of these events, I have developed post-traumatic stress disorder (PTSD). The relationship with my son is compromised, as the hate I felt for him in those long, lonely and terrifying hours during the induction still surfaces. I have difficulty loving and bonding with him, and took a nanny to care for him so that I would not need to see him. I have required both infant-parent psychotherapy and trauma therapy (EMDR) to try to repair the bond (Dr. 8 kindly arranged the referrals). This trauma sequelae breaks my heart, as my career used to be devoted to children, and my son was originally so very wanted. My work has also suffered - I was recruited from abroad to set up an advanced gene therapy program for the hospital, but I find it difficult to work for an organization which allows the families to suffer the way we did.
The negative effects of postnatal depression/PTSD on children are well documented and include increased risk of child abuse, lower cognitive performance, and anxiety and depression in adolescence. This adversity is expensive and complex to treat. I’m disappointed by how indifferent my obstetric colleagues are in preventing these effects, and how the fear of an unnecessary caesarean has reached the point where it is acceptable to emotionally destroy the woman in the quest of a vaginal delivery. I feel that the unit has forgotten that the definition of successful birth is a family who enters their new life phase unharmed and empowered, not the fact that their baby entered the word vaginally. If the unit argues that an attempted vaginal delivery irrespective of maternal consent is of benefit to their patients and my experience is an outlier, I please expect to be provided with references to peer reviewed, internationally recognized data that balances the perinatal mental health difficulties against surgical complications. Only with such data at hand can unconsented vaginal birth attempts be justified as evidence-based medicine.
Foreign MD
Ullevål sykehus, September and October 2020
