[Editor’s Note: Trigger warning of child and sexual abuse, self-harm, suicidal ideation. Only read this piece if you are in a safe place. If you are, read this and know that too many mothers are misdiagnosed and written off like this Warrior Mom. We share her story because we don’t want it happening to you, to those you love, to anyone. This mama had risk factors that should have sent off alarm bells for all professionals involved. We’re so very glad she is still here to tell her story. -Jenna]

Misdiagnosis Misses Postpartum Psychosis

I have a story to tell; we all do. Finding my voice has NOT been easy. After verification of a misdiagnosis I received, I feel like my voice is free and that I am able to talk about my experience. But, fear is clouding my vision. I need my story to be heard and I’m unsure why I feel so strongly about this.

June 2008

I’m about 8 months pregnant, maybe 8 1/2 months. So much has happened this pregnancy, but I’m starting to stop denying that I’m pregnant. Depression and anxiety have already overtaken my life. I lost the job I loved. I withdrew from school and left the degree I was meant to earn. We had to move from the small village we had lived in for 6 years back to the city. It made me easily accessible to toxic family and friends. Instead of being a 15-20 minute drive away, I was now 5 minutes (10 with traffic) away. All of this fed into my depression and anxiety, and fueled my OCD around anything surrounding Nathaniel including his clothing, bedding, and toys.

I just picked Hunter up from school. He was wrapping up the 1st grade, but would be attending the summer program during the month of July. As we came up to a set of lights, I was in the right hand turning lane. There was a school bus on my left. Since the light was red, I had slowed down to stop. The bus was already at a complete stop. On the right of me was the entrance to Dunkin Donuts. The bus driver waved a driver wanting to turn into the parking lot. Instead of him turning into Dunkin’s, he turned right into me.

My first thought was Hunter. Was he okay? Did he get hurt? How do I get to him? My thoughts NEVER once went to the baby; he wasn’t a thought or concern. As the contractions started, I didn’t think of his well-being; I was still denying I was pregnant. Hunter was so pissed. He whipped off his seat belt and yelled, “What is wrong with you? Don’t you know my mom’s pregnick?”

I called 911, because I needed Hunter checked out. The dispatcher was concerned because I was having contractions. They sent an ambulance. The EMS workers were wonderful with Hunter and calmed his worries about me. They put us both in the ambulance and off we went. Luck was on my side because my OB was the one on call at the hospital, so I was brought right up. I was hooked onto monitors and machines.

Next thing I know, my parents are there, Rob is there. I didn’t call my parents, but I did call Rob. My parents found out because as I was being carried away in the ambulance, my sister was leaving our grandmother’s house and she saw my car. So she called our parents.

I felt numb. I was mad my parents were there. They were bitching about how Rob wasn’t there yet. He worked 20 minutes away, but it was 45 minutes by bike. Neither my parents nor sisters even offered to go get him. Instead, they just bashed him until he made it.

My thoughts were dark and scary, saying the baby would die, he would be born still, he would have disabilities because of the accident. None of those things happened and I’m blessed. When my doctor came in, she asked how I felt about being induced and I said sure. The sooner I got rid of this kid inside me, the better off I would be! I’d get my body back and I could stop eating and lose weight. Because of his size, she induced us three weeks early. I still felt nothing. My mother said I only wanted to be induced so I would know his birthday. When the truth is, I wanted him out of my body. Hours later with the contractions stopped and follow up already scheduled, I was sent home.

July 2008-August 2008

When I was in labor and ready to deliver, my doctor did the perineal massage and it triggered me to a time in which I was abused and raped and that led to my dissociation.

When I was growing up, I was severely abused in every which way, and because of that, my brain split into other parts (alters), and that is how I survived the horror I grew up in. The alters had been “quiet” if you will for many years, and we lived in peace at least until I had Nathaniel. And then in that one moment, everything changed.

The room went black. He was stuck on my pelvic bone; he wasn’t breathing. They were hitting code red, nurses were rushing into my room and jumping on me to get him out. I felt victimized all over again. I tried to say “NO” but no one was listening. It felt like what happened many years ago all over again. I dissociated to get through his traumatic delivery, and when they placed his ghostly white body on me with his purple and blue head, it took whatever strength I had left not to push him off me. I didn’t want him!

Everything had changed. Everyone was with the baby. As he was finally breathing, he didn’t need to go to the NICU. Then the nurse brought him to me and told me I needed to nurse him. I told her to give him a bottle, I didn’t want to nurse. I told her to keep him away from me, I didn’t want him. She carried him over to me, undid my gown and brought him to my breast, where he latched on like he had been born to do this. I pushed back the tears and swallowed my words. I put the smile on my face and felt nothing.

The second night in the hospital, the nurse came in and saw me crying and said that it was normal to cry from so much happiness. I told her I wasn’t happy. She said it was hormones and it was normal. The next day, we were discharged with the knowledge that the nurse would be coming to the house the following day to take blood because his bilirubin levels were elevated.

So, we went home.

It was in my head that I had to nurse; there was no other option. The next day, the nurse came and drew his blood and learned that his levels were even higher. We were to immediately get him to the hospital. So we did. I didn’t think to pack myself any clothes or toiletries. I grabbed the diaper bag and we left for the hospital.

Once there, he was admitted and they said I could stay with him. He was put in a bassinet with special lights for phototherapy. I wasn’t allowed to hold him except once every two hours to nurse him and change his diaper. The nurse would come in and give him 1/2 ounce of formula with a syringe.

On the second night there, mind you I was in the SAME clothes and everything (including the wonderful “diaper” you get to wear after giving birth), I had nothing clean to change into and I didn’t know how to ask anyone for anything. I was all alone for most of the day and night.

During the day for two hours, my friend would come visit while Hunter was in summer school program. Then when Rob got out of work, he would come and visit for an hour or two, and I couldn’t ask them to bring me clothing or toiletries so I could shower. I couldn’t ask them to bring me food or anything to snack on. I was given breakfast every morning, but all other meals were my responsibility to provide for myself.

On night three, I have been up for almost four days straight with some light dozing. I had to nurse every two hours around the clock. I had been doing this since he was born, every two hours nursing him and right after nursing him, I pumped.

When the nurse came in on the fourth night, I was a wreck. I hadn’t showered in days. I felt disgusting. I was being forced to nurse. I was trying to deal with the nurses who kept repeating it was my fault we were there because his bilirubin levels reached 19.7 and it was because we had a traumatic delivery.

It was my fault. I did this to him.

I needed sleep. I needed a shower. I needed clean clothes and girl products—and I had no one to ask. I hadn’t left the hospital room in four days.

The fourth night, the nurse came in and I was caught crying. She said there was a group starting that could help me. She said she would leave a note for the nurse who ran it to see me the following day; the nurse never came the next day.

The nurse on the fourth night begged me to get some sleep, and I couldn’t. I told her I had to nurse, the baby needed to eat. I couldn’t sleep because I had to nurse and I had to pump. She said she would use a syringe to do one of his feedings and that she would wake after four hours. I slept for three.

On the fifth day, his levels were finally low enough to go home again. The doctor said she was concerned because he had moderate shoulder dystocia, and then hello even higher anxiety. This is all because I dissociated; I couldn’t get out of the dark inside me head. This is because of the traumatic birth. This is because I didn’t want to nurse him. This is my fault, my fault, my fault—over and over again, the tape was on repeat and I couldn’t stop it.

I had an aunt that shared with me that Rob was disappointed in me and how badly I did with Nathaniel’s birth. I’m still crushed. I did so well with Hunter’s labor and delivery. He was so proud of me the day we had Hunter; he still talks about his birth. He never talks about Nathaniel’s. My heart is heavy. What made it even worse was how this aunt said how Rob was so disappointed in me. It was like she was happy that he “confided” that in her.

When Nathaniel was three weeks old, I had to start babysitting my at the time three year old niece. I had to take care of my seven year old a three year old and a newborn who I didn’t even want. I was angry. I was angry that my sister could screw off and do whatever she wanted and that her daughter was dumped in my lap. I was angry that I had to take care of a baby I didn’t want. I was angry I had to breastfeed him and that he wouldn’t take a bottle no matter what. I was angry that I had a seven year old that had Asperger’s and no one would help.

Not once did anyone ever ask how I was doing. I wasn’t sleeping. I hardly ever ate. I couldn’t get in the shower. About a week later, I was on my way to the ER because I had so much pain in my stomach. I learned I ended up with an infection in my uterus. It most likely was because I was stuck in the hospital room for 5 days without a shower or anything clean to put on. Lots of medicine later, it was gone and I was still stuck breastfeeding.

My 30th birthday was shortly after Nathaniel’s arrival. We loaded the kids in the car after my niece was picked up; I didn’t even realize it was my birthday. We drove around, and I was getting ticked off because I needed to be at home where people couldn’t see me.

By this time, the whispers had started. I could hear them in even the brightest corner. We met up with two friends so they could take me out for a surprise dinner. When I learned this, I panicked. I couldn’t leave my baby. He needed me. What if he needed to nurse and I wasn’t there to feed him? No, I couldn’t go, I can’t go, how dare they think I could leave my baby? What the heck was wrong with them? We took the baby with us and went for dinner.

Two weeks later, I couldn’t handle it any longer.

All Nathaniel did was cry or nurse, nurse or cry. Nothing I did ever made him stop crying. Ugh, this baby hates me, I can’t be a mother, I’m not good enough. I emailed my doctor and apologized for everything she did for me to help me get pregnant, but I was wrong and made a mistake. I needed to put both my kids up for adoption. I couldn’t be a mother. I was worthless and pathetic. I changed personalities; I heard whispers. I was crazy and a freak.

My doctors office emailed me the number for child and family services, and I called them.

A social worker came over while Hunter was at school. She sat in my living room and we talked. I remembered her and she remembered me from a program I went to when I was a young child. She knew some of my tragic history. I sat there nursing Nathaniel all the while trying to convince her I had to give both him and Hunter up for adoption. That they needed a real mother, someone who could do fun things and love them as a mother should love them. I never told her about the whispers or the alters (I didn’t realize at the time that I have dissociate identity disorder).

She said that I was the perfect mother for the boys and that she could see how much I loved even Nathaniel because here I was insisting I have to give him up for adoption while he is on my boob! She said I showed all the classic signs and symptoms of PPD, PPA, PPOCD and PTSD from the childbirth. She said she knew of a PPD support group that could help. She said there would be other women there that were experiencing some of the same things as I was and that it could help. The social worker came back the following week and dropped me off to the group that literally saved my life and most likely that of the boys.

A group member talked about going to a Stroller Strides class, and I was excited to meet up with her and join. I went to the mall that day and when I saw the mom from group, she just seemed to fit and belong with this group of women. I walked away in tears because I didn’t fit in or belong.

I never went to that group though I heard amazing things about it. To this day, I have regrets, but the whispers were there telling me that I didn’t belong, that I didn’t fit in, that I was worthless, that the kids needed a better mother, that Rob deserved a real wife, that it was my fault that Nathaniel was extremely colicky and had severe acid reflux and needed to take medicine for it. Every day the whispers got louder and louder.

I still attended group. I didn’t share what was really happening on the inside because the whispers told me I was a freak and that they would get the kids and they would be taken.

I can hear whispers in my head. I can see the shadows swaying. They whisper to one another about me, about how bad I am doing as a mother. I learned a secret way to make the whispers to stop. I learned a way to make it all go away, to feel numb, to not feel, to be able to get through the motions of caring for my children and niece and family. It’s something I did as a young teenager, to make myself feel, to remind myself that I am still alive, to punish myself.

When I did this as a teen, I wanted to die. I wanted God to take away all the pain that I felt inside and I knew that dying would make this happen. As an adult, I did it to feel relief, to get that “peace” feeling. Oh God, how it felt so good. I engaged in self-harm. The whispers said this was the way to do that. After Nathaniel, I never wanted to be touched again.

So I did just what the whispers said. After another round of nursing and another round of hours of nothing but crying (thanks to severe colic and acid reflux), I was finally able to escape to the bathroom. I pulled my pants down and sat, I opened up my goody bag, and there inside, was the most wonderful prize, box cutters! I engaged in self-harm.

Nathaniel was four weeks old. A week later, I started to expand the places of self-harm, in places NO one sees except one’s partner or doctor. I did’t ever want him to touch me again; he repulsed me. I hated him. The whispers told me it was his fault. They told me it was my fault as well and I believe that. I don’t EVER want another child. I will do things to make sure that can’t happen.

Nathaniel turned six weeks old, and I had visible self-harm marks but forgot about a stupid doctor’s appointment. She asked how I was feeling over Nathaniel’s screams. I told her that’s all he ever does. She asked me how I was doing. I said, “I’m fine.”

She did the exam, but I didn’t want her down there, didn’t want her to touch me! I felt mad at her; I felt angry with her! She should have told me about the perineal massage and about how they break the bed down for delivery. I trusted her to keep me safe. I felt she violated me. I hated that I felt this; she’s the reason Nathaniel is here to begin with. I forgot about the cuts as she’s down there doing the exam. She asked what happened. I remain silent as I am told to do. She asked if Rob did this to me and to this I respond with a solid and firm “NO.” She said if I wanted to talk about it, I could email her and make an appointment to talk to her. I remain silent.

I fall deeper into the black pits of hell.

December 2008

Months later, I think Nathaniel was about five or six months old, I finally started ytalk therapy. My therapist was a student and only there for three months. I was sent to another therapist and then to a doctor for meds. I still hated breastfeeding. I didn’t want to nurse. I would nurse then pump and freeze what I pumped. We had quite the stash in the freezer.

I felt numb. I didn’t feel anything, but you can bet I put on the mask and told everyone otherwise.

March 2009

I finally see a psych doctor. He put me on an SSRI and gave me something for sleep that I didn’t take. The medicine didn’t help; the whispers got louder, the OCD and anxiety became more intense. I had to clean the house. I had to scrub the house with bleach. I couldn’t let “them” take the kids. I had to get the germs out. I took straight bleach and a toothbrush and started to scrub the pantry and then the kitchen.

A good friend out of concern showed up at my house. I am unsure what brought her over; I had to clean, I had to get the germs out, I couldn’t let “them” get the boys. This friend called another friend and they brought me to the hospital, to the ER. Of course doctor, I am not on any drugs. Why no, I am not drinking. I take medicine. Nope, I don’t hear any voices; I’m not a freak.

The whispers talking to me, “Good, get a higher dose; it will make it easier” Why, no doctor, I am not suicidal, while in my head, the whispers were planning exactly how to die. Because that’s what I needed to do. I needed to die; it is what I deserved. I couldn’t get the whispers to stop. I couldn’t get the alters to quiet and work together. On the outside I looked like I was holding it all together, on the inside the lies were being told. The ER doctor increased my medication and sent me home.

June 2009

Nathaniel is only a couple of weeks away from turning a year old. The whole year has been so dark for me. I don’t remember his milestones. I just simply know he reached them, because he has teeth, he’s walking and already saying a few words. He still nurses and I am so distant and disconnected from him.

As the days pass by, I count down to when I can end it all. It’s the only way. Rob, the boys, family and friends will just be better off without me in their lives. I bring people down. I’m worthless. I’m pathetic. I’m unlovable. I make living with me hard. I don’t do anything right, ever. I don’t belong anywhere, I don’t fit in. People just say things to be nice, not because they mean it. It’s time to end my life; I must die. Rob deserves a better wife and person to mother his kids. I’m not good enough.

I have a plan. The whispers have to stop, I need them to stop. I can’t function with them. Dying is the only way to make them quiet. I’m convinced of this.

I have an appointment with the facilitator of the PPD Support Group I attend. I meet her in her office and we go to the conference room so we can talk (she shared an office). I don’t know what happened or what either of us said. I do believe I said I had a plan when she asked me if I was suicidal. She did know I was engaging in self-harm. She said she would go downstairs to the ER with me and I said okay.

I wasn’t worried. The whispers would tell me what to say to get more medicine and I would be discharged again. Only, that didn’t happen.

I snapped. The doctor was a freaking idiot, he kept asking me about the boys. What boys? I don’t have kids! This guy is a fruitcake! Allison is telling him I have a baby who’s almost a year old. “Shut up, shut up, SHUT UP! I DON’T HAVE ANY KIDS!! Make it stop, I can’t do this anymore! Let me go, I’m leaving!!”

Allison asked him to order me something to calm down. He said, “As soon as we get blood drawn and she gives us a urine sample.” A nurse comes in and says the baby needs to be nursed. “Baby? What baby? I don’t have any kids! Fuck you, get out of here!” I don’t have kids. The doctor asked, “Do you hear voices or see things that aren’t really there?” Um, no dumbass! And if I did, I wouldn’t tell you! How dare you ask me something so stupid? Jackass!

All the while Allison is trying to tell him I have postpartum mood disorders. Finally they got their blood sample and urine sample. Doctor comes and and says there’s no drugs in my system. Well, no shit asshole. We’ve already established that I wasn’t on drugs I haven’t sleep more than two hours a night in almost a year. I’m just tired and want to sleep forever. He finally ordered a medication to calm me down. Thank goodness this is almost over and I can get out of here.

He tells Allison there’s a bed open at Pathways. Next thing I know, I’m being transported onto a locked floor. They tell me to take me clothes off. Screw that! I was already humiliated in the ER again; no way my clothes are going off.

My breasts are full. They hurt. I need to nurse. Get my baby. I need my baby. He needs to eat. GIVE ME MY BABY! I have to feed him. He won’t eat unless he nurses. He doesn’t take a bottle. He never did. The doctor asks, if he eats table food and I say yes. The doctor said that’s all he needs. No, he needs to nurse. Can my husband bring him so I can nurse him? Doctor says no one under 18 can be on the floor.

Allison asks if I can go down to the nursery to nurse him. Doctor says no because I’m a patient on a different floor. He said he’ll have a breast pump brought up so I can pump and they would bring it to the peds floor for Rob to pick up. I need to nurse the baby. The baby needs to eat.

The next day, the day shift doctor starts me on a series of different medications. I have to stop breastfeeding. There is no option. I again ask for permission for Rob to bring Nathaniel in so I can nurse one last time. I needed to feel a connection with this child. I needed one last nursing session to say “goodbye” in a way. The doctor forcefully and angrily said “NO.” I had one last nursing session in the bathroom, in my room, on the psych ward in the hospital.

I was there for a week and they made me attend groups that didn’t help me with anything. I wasn’t there detoxing or for alcohol. The meds didn’t stop the whispering and I could still see “them” in the corner of the room.

No one knew I was hospitalized. My family doesn’t believe in mental health and they are unsupportive and toxic. Rob still didn’t understand what was going on. He always says, if you’re going to kill yourself just do it. He didn’t get that it wasn’t so much about dying. It’s because I’m seriously sick. I’m ill. It’s about getting the whispers to stop, about Rob being free to find a real wife and mother to the boys. They deserve a real mother. Rob deserves a real wife, one who isn’t sick or crazy like me.

I am discharged from the hospital. The meds they have me on leave me emotionless. I went from numb to emotionless. I’m better on meds at little more functional at least. I still struggle with being forced to stop breastfeeding and that I couldn’t nurse Nathaniel one last time. I think it’s going to always be a struggle for me. I needed closure on that and because it was forced on me to quit, I feel as though something was taken away from me.

Nathaniel wasn’t ready to stop nursing. It was his comfort. All the milk I pumped since his birth, we froze. While I was in the hospital, Rob and our friends worked with Nathaniel to take milk in his cup. Finally, he did. The day I was discharged and I held Nathaniel, the first thing he did was snuggle down into me wanting to nurse. I couldn’t handle it and burst into tears. I wanted to nurse, I needed to. It’s my lifeline in a way.

Nursing Nathaniel was the only thing that kept me alive. If I followed through and killed myself, how would he eat? Now that he was off the breast, there was no reason to keep going. The doctors silenced me. They taught me it didn’t matter what I needed or wanted to say because I was invalid. A lot like how I grew up. So though I smiled on the outside, everything continued to get darker and darker on the inside and no one knew.

Four months later, we moved to Kentucky.

2016

I experienced PPD once again as we had a miscarriage in 2014. We had one in 2012, as well, but the one in 2014, affected me differently. I’m not ready to talk about this just yet.

Recently, I asked my therapist to research postpartum psychosis. I didn’t want to research it, didn’t want to look it up. I have shared other women’s PPP stories, though I have never read them. I was afraid of what I would learn and I didn’t want to self-diagnose that what I experienced wasn’t just PPD.

My therapist readily did so and later that day emailed me. In writing about my experience for the first time, my original diagnosis didn’t feel as though it “fit,” it didn’t feel right at the time either. It came out that I was misdiagnosed almost eight years ago. The doctors said I was bipolar, when in fact what I experienced was Postpartum Psychosis.

When my therapist shared this with me, everything clicked. It felt “right.” It fit what I went through and for the first time in years. I felt, well, I feel hope for myself and I can now see the light through the shattered pieces of me.

I feel angry that the professionals around me didn’t question me more, and I feel as though I am not allowed to be angry at them. My OB helped us become pregnant with Nathaniel. How can I be angry at her for not catching the very noticeable signs and symptoms I began experiencing while I was pregnant? How can I be angry with her, when at my six week postpartum visit, she saw my self-harm and just accepted my answers? How can I feel angry with my group facilitator when I love her to pieces for everything she did for me? Had she and I not met that day in June, I honestly believe and feel depressed in my heart that I would have followed through with my plan.

I feel conflicted. I have so many mixed feelings and emotions screaming through my body that I must now work through. What I can say, is that for the first time since I was given my postpartum psychosis diagnosis, I can share my story and say: I survived.

~Nicole Grodan