By: Allie Lindsay Johnson, PS-WA Executive Director
Content warning: Postpartum Psychosis, NICU
With my experience of depression following a miscarriage, I was on the look-out for signs of depression. It never occurred to me I’d develop the most rare of perinatal mood and anxiety disorders: Postpartum psychosis.
My little girl Evie’s IUGR – intrauterine growth restriction – and my hypertension had turned into three sets of hospital admissions, the last of which kept us in the hospital until her birth – at 32 weeks and 1 day.
Evie was so small she was on a 72 hour hold protocol before I could hold her. Until then, I could only touch her in her incubator every few hours alongside her care times. Despite the disappointment and all the fear that accompanies a NICU stay, I remember feeling very happy, even ‘super human’. At the time, I just credited the natural high of oxytocin and the excitement of being a new mom.
We lived in the NICU for 12 days until I broke. Pumping every 2.5 hours, care times with Evie every 3, pain medication every 4… I was barely sleeping. Every time I got close to sleeping I would find one more thing I needed to do before going to bed. I was making lists of EVERYTHING because I couldn’t bear the idea of missing something that could help my baby. Despite all this, I still felt sharp, in control, and euphoric. One morning my husband and a NICU nurse finally convinced me to get some sleep. I woke up shortly after, confused and distressed. I had lost all sense of time; everything between Evie’s birth and right then felt like it had occurred over the course of one 30 minute dream. My husband rushed me out of the NICU to a nearby houseboat a friend lent us to get some sleep away from the hospital.
It was there he told me he thought I was experiencing postpartum psychosis. He remembered how I’d described it from conversations about my work at PS-WA and he had looked up the symptoms again that day. I didn’t believe it – but I trusted him – so I helped him develop a plan for what to do IF it was psychosis and fell asleep.
When I woke up only minutes later, the plan was in place. My reasoning was not. I ran around the house boat, determined all my friends and family were there. I eagerly threw open closet doors, certain I was seconds from a reunion. My delusion was strong and impenetrable. My husband, terrified I’d run right off the houseboat and into the water, tried to restrain me.
When the ambulance showed up, I was elated. In my mind, I had ‘figured it out’ and now would be able to take my sweet baby from the NICU. Through big smiles I kept telling the emergency responders it was ‘only 12 days in the NICU!’ My communication skills were out the window. I was only able to repeat words and short phrases. I kept saying ‘Psychosis – Perinatal Support Washington – PS-WA – 12 Days in the NICU – I have psychosis’ or some variation of it for the entire ambulance ride and as I was wheeled into the ER. I couldn’t understand my husband’s concerned face. We were about to get our baby girl out of the hospital!
A few hours later, I was released with a diagnosis of postpartum psychosis and a prescription for one Ambien. I went home, slept, and woke up that night with the same persistent delusion – this time only enhanced by a dreamlike hallucination. Back to the ER we went, again accompanied by my excitement we could take our baby home.
When I got there my blood pressure was through the roof – 200 something over 200 something. I was admitted back to the same floor we lived on before Evie’s birth. By this time, I couldn’t manage even the short phrases I was limited to before. I was repeating individual words, getting stuck on one word sometimes for hours. I was so manic, I was completely incapable of sleep. No matter how many antipsychotics or sleeping pills they gave me, my mind would not slow down, and I wouldn’t sleep for more than 5 minutes before waking myself. It would be days before I could sleep for more than an hour straight. My husband became sleep deprived taking care of me.
I had so many delusions during the week I spent on that floor, ranging from fantastical to ordinary. I couldn’t understand the difference between dream and reality.
- I thought if I could write ‘DEI’ in my notebook enough I could end racism.
- I believed I could travel through time.
- I thought someone had given me the choice to have magical powers or I could give them to my daughter.
- I thought somehow my friends, family, and colleagues knew I would develop psychosis – or that I had been sick for years and missed my daughter’s childhood.
- I thought everything was a test or a game.
- I was certain, given the rarity of my disease, my actions were being secretly recorded for future study – and I wanted them to be; I was eagerly looking for cameras or some tangible sign the psychiatrist team was learning from my experience.
- I thought nurses or interns with the same name as an old friend were that old friend.
I spent hours upon hours trying to work out what was happening in my mind and retracing the days prior.
The worst delusion by far was that I had hurt Evie. In the back of my mind I knew, while not common, both infanticide and suicide were connected to psychosis. I forced my husband to send me no end of proof she was alive. After I noticed her eyes were closed in all the photos, I insisted he go to the NICU and video chat with me from there. But that wouldn’t suffice. ‘I can’t see her brain’, I’d tell him. What if I had dropped her when I was up, sleep-deprived, and the only one in the room? It was a persistent delusion that continued even after I was allowed to see her.
I had a very difficult time trusting the rotating medical staff. My husband drew a ‘circle of trust’ on my patient whiteboard to remind me who I could trust. I would have a person write their name in the circle and date it, many times insisting another person in the circle of trust also sign off on a new person joining the circle. Early into our stay, I wasn’t even sure if I could trust my husband. Without remembering the context, I was revisited by an image of him restraining me on that houseboat; the image scared me and while he was sleeping I told a nurse to have him removed for my safety. When I realized what I had done, I was terrified my husband wouldn’t be able to stay with me; luckily, she had been staying with us for some time and didn’t raise alarms.
One of the worst battles I fought was one with my memory. Not knowing what I did or said, how I acted, what I thought, for a full week is scary. In the beginning, my memory was so bad I had to say the same thing over and over again until I either did it, told someone, or wrote it down. Most days I couldn’t even remember my diagnoses. My memory would reset unexpectedly and my husband would have to explain the same thing over and over again.
I thought every single thing meant something important. I wanted to document everything. ‘The log’ became a very crucial piece of my hospital stay. I wouldn’t sleep until something that felt life-changing at the time, but was really a minor observation, was ‘in the log.’ I tried to find significant connections among things where none existed. My husband would try to remind me to take everything at face value – ‘when you hear hooves, think horses not zebras.’ As he joked one day on the way home from the NICU, ‘you were hearing hooves and thinking ducks – because you saw a duck once when you were five.’
According to my husband, it took about 5 days of antipsychotics to be 30% myself. The first few days were the most challenging. I remember being curled up by the window, sobbing, sure I had hurt Evie, followed shortly by my husband and I laughing about past adventures. I remember a morning I eagerly accepted help from him and nurses, followed by an afternoon I was enraged by everyone ‘handling me with kids gloves.’
Looking back, the signs of psychosis started in the early days of the NICU – somewhere just after the 72 hour hold. I was already writing everything down, determined to track everything so I could be a good advocate for Evie. A glimpse at my notebook from that time shows my increasing manic state and lead-up to my eventual hospitalization. Even then, I knew something was wrong, the mania I was experiencing wasn’t just a new mother’s excitement.
The most acute symptoms of postpartum psychosis can last anywhere from two to 12 weeks. I unfortunately didn’t realize at the time of my release from the hospital and assumed I was no longer symptomatic, but it would be over a month after being released until I was mostly back to normal. When we got home important papers would go missing (likely put someplace by me without thought), everyday activities proved challenging with my short memory, and stints of mania continued.
I thought I was being observed by the psychiatry team out in the world like the Truman Show. I thought my husband had placed a song over the speakers just for me when we visited a hardware store. I’d see a street sign with graffiti that happened to be a friend’s name, look at my husband knowingly and say, “you’re trying to tell me that’s a coincidence?”. I continued to think stories on the TV or radio were somehow ‘planted’ to have personal meaning. My husband and I started to affectionately call this type of paranoia, Lonny the intern. Lonny was going all across Seattle to leave me messages everywhere…
The pandemic added a whole other layer to my disorientation to time. To and from the NICU, I would get incredibly confused. Some people were wearing masks and some weren’t. ‘Are we still in a pandemic?’ ‘How much time has passed?’ Maybe I had been in the hospital for months, maybe it was only days.
All the while we were still in the NICU. The week of Evie’s due date, symptoms and memories came flooding back. After hearing multiple NICU staff reference her due date as a probable time for homegoing, I was heartbroken when Evie started experiencing feeding difficulties and it came and went. I was going to weekly therapy when the relapse happened – between appointments – and I didn’t know how dangerous it was to not call my psychiatrist. The truth is… mania can be really fun. I felt energetic, sociable, productive, youthful.
After weeks of struggling with my memory, I saw this relapse as an opportunity to answer a lot of the questions I had been asking myself and my husband. I did get a lot of answers, but it was a dangerous game. Luckily, nothing scary happened and my psychiatrist got me on new medication at our next meeting.
For us, life got much better when we finally took Evie home, at 9 weeks old. Therapy helped me through the adjustment – and continues to – alongside the support of friends and family.
Many people and resources allowed for my story to play out the way it did. While certainly traumatic, I regularly remind myself how much worse it would have been without my inherent privilege. Not only am I a white woman, who regularly experiences better care and outcomes than women of color, but I’m the leader of an organization that specifically helps parents with mental health complications surrounding pregnancy. My husband noticed the signs of psychosis because I talked about my work at home. My OB fought for me to get care in a space I felt comfortable. My care team actively included my husband and I in my care and believed my pain. My PS-WA board member connected me to a psychiatrist who specializes in postpartum psychosis, who added me to her already full caseload. We were able to spend every day in the NICU without losing our jobs or home.
Every parent’s story, every parent’s experience with a perinatal mood and anxiety disorder or stay in the NICU, is personal. I feel extremely lucky the job I returned to after parental leave will allow me to support other parents with stories like – and unlike – mine.
The more we share these stories, the more we can dissipate the stigma around mental health. Thank you for reading mine.