32 | Jess
“I was so afraid of developing another obsession like that, just so terrified that something like that would happen again because it was just horrible. It’s so horrible to have an illness that makes your kids your trigger, when the foundation of your illness is a fear of anything happening to them.”
After a blissful experience with her first son, it never occurred to Jess that a subsequent pregnancy and postpartum could be any different - until she found out she was pregnant with twins.
From real and perceived health complications, Jess’s mental health rapidly declined with every intrusive thought and compulsion that took over her life. The increased caretaking demands of parenting multiples and a toddler only compounded the feeling that she wasn’t enough for her children. Despite being cared for by the local acute mental health team, Jess started to experience hallucinations and psychosis.
This is one mother’s heart-wrenching story that epitomises the painful realities of experiencing a perinatal mental illness: of your children being both your motivation to get better and your trigger; of wanting to keep your children safe but feeling unsafe in your own body and mind; and of wanting the best for your children but feeling like they’re better off without you.
This is Jess’s story. And it isn’t a story to miss.
When Jess first wrote to me, she fondly reminisced about her first pregnancy and postpartum: “all my mental health concerns seemed to disappear.”
“I found out I was pregnant and it was honestly the best day of my entire life. I just felt this overwhelming sense of calmness come over me and I thought, ‘this is my purpose. This is what I'm here for. I'm going to nurture this baby. I'm going to love and raise this baby. This is what I am here for.’”
“We developed the nursery pretty early on in the pregnancy, and I would spend all of my time in there, just sitting in the nursery, sitting on the rocking chair, reading the baby stories and just being present and just being with him and not having a care in the world about anything except for this beautiful baby that I was growing.”
“And then he was born, and there were difficulties, like I think most mothers go through with breastfeeding and coming to terms with having a birth that you didn't think was going to happen. But once we got through all that, it honestly was just the most blissful journey through motherhood.”
“I truly loved every minute.”
It never occurred to Jess that her second pregnancy and postpartum could be any different.
“So when we were planning on becoming pregnant, I was so excited because I knew how much I loved motherhood, but I did have this niggling anxiety that I was able to give my son so much of myself and be so present all of the time. What is going to happen to him and what's going to be different for this baby when I can't give that to them? And how is that going to impact all of us? And so that was just at the back of my mind. I knew that we wanted to have this second baby. I knew it was going to be wonderful for our family, but I just had that anxiety.”
“And so when we went into the ultrasound, the dating scan, twins had never crossed my mind. I did not even think that that was a possibility.”
“I started crying as well… my eyes were just bright eyed and bushied and tears coming out. And I couldn't believe it that we were having two!”
“It was a happy moment and a moment of fear, to be honest, where I thought, ‘oh my gosh, I was worried about adding an extra single baby into the mix. How am I going to cope with two? How will my love spread?’”
“That was really reassuring for me in that moment, but not enough. And I guess this is where my perinatal illness began.”
“I think it might have been maybe around 16 weeks, maybe, that I got these results back. And so I was in with my midwife and she was talking through all of my results and she was very calm and casual and collected and she said, ‘oh, by the way, you did come back with low PAPP-A [pregnancy-associated plasma protein A], so you have to have extra screening and scans for that, but because you're having twins, you're having that anyway, so it's not an issue.’”
“That sent me into a bit of a spiral because I thought, ‘okay, if it was a singleton pregnancy, I'd have to have extra scans. What aren't you telling me?’ And so she looked it up and she said, ‘PAPP-A is a protein secreted by the placenta and your results indicate that you've got low secretions of that.’ And I said, ‘okay, but what are the clinical implications?’ And she couldn't tell me.”
“So obviously I left that appointment feeling not very reassured and I went down a Google rabbit hole. I called the birthing suite. I have to have been before 20 weeks at that point because I don't think I was supposed to call the birthing suite that early in my pregnancy. But I just said, ‘I got these results, can you tell me what they mean?’ And she said, ‘there are indications that it can lead to this, but every low PAPP-A pregnancy that I've delivered has been totally fine. I'm so sorry you're going through this, but you are getting the extra scans, so if there's anything wrong, we'll pick up on it.’
“That was really reassuring for me in that moment, but not enough. And I guess this is where my perinatal illness began.”
To ease her anxiety, Jess constantly sought reassurance, joined a local PAPP-A Facebook support group, called an obstetrician for their specialist opinion, and bought a fetal heartbeat doppler which she used every single night.
“I guess I slid under the radar because I didn't tell my midwife that I was using a fetal doppler because they're against it. So I never told her. And I was so meticulous in my appointments when they did the fetal doppler in asking, ‘oh, so you said that wasn't the heartbeat. What was that then? How does that sound different?’ And so I was being really sneaky in the way that I was gathering information to get my reassurance… so when I had the fetal doppler, I felt confident that I was getting the results that I wanted because I'd, I suppose, done my research in appointments - which is not healthy! But none of us picked up at that point that I was getting unwell.”
“My biggest fear was just not being enough for my children and not being able to meet their needs and fill their buckets all at the same time. And so when all of this was unfolding for me, it was like my worst fear coming true. I’d have three screaming children who just wanted to be held and there was one of me and I couldn’t do it.”
Despite the fears associated with low PAPP-A, Jess’s pregnancy and early postpartum was uncomplicated.
“It was beautiful. We were in a beautiful little bliss bubble. I felt really empowered. In the ten days that they were in special care, they were on such a strict feeding schedule and I was adhering to that. It was feed every 3 hours. I'd pump for an hour. Feeding them would take an hour and a half. I'd get maybe half an hour's sleep and then be up and at it again. And I survived that. You know, just, somehow when you're in those moments, you find the energy - you just do - to get up and get the job done.”
“And when we were able to take them home and relax that schedule just a tiny bit, it was amazing, and spend more time with them and not feel like we're on such a vigorous routine. And my husband was off work for eight weeks, so that was incredible. We were just in a little bubble.”
“So at eight weeks, my husband went back to work, and it's around the same time that your babies start to wake up a little bit and they're not just sleepy newborns. And that really came to action around the three month mark, and my stress levels just skyrocketed.”
“My eldest son, Julian, entered this period where he was having a really difficult time adapting to the babies and our new life. You know, he'd gone from having me all to himself four days a week to having to share me with two other newborns.”
“He had this really strong preference for me to the point where, you know, he only wanted me to fill up his water bottle. He only wanted me to serve him his dinner. He only wanted me to take him to the toilet. And I felt so obliged to meet those needs of his because I felt so guilty with how displaced he must feel with two new babies in the picture.”
“And so I was juggling triple feeding, I was breastfeeding and then topping up with formula and then pumping and then trying to run to Julian to meet all of his needs that I possibly could, trying to find time to connect with the babies and hold the babies. I was just run off my feet.”
“And then, yeah, Kane went back to work, and on came the stress. I've never felt stress like that in my entire life. I'd even go as far as to say it was distress - just hearing one of your babies cry and having to decide whether you're going to put the other baby down, for them to start crying, to go soothe the crying baby or persevere with The baby that you've got to get them to sleep or to get them To settle, but fighting every instinct in your body, screaming at you, telling you to go pick up that crying baby.”
“You know, my heart felt like it was beating out of its chest. I felt dizzy. I felt nauseous. Listening to the cries and not being able to do anything, it really was the downfall of my mental health.”
“My biggest fear was just not being enough for my children and not being able to meet their needs and fill their buckets all at the same time. And so when all of this was unfolding for me, it was like my worst fear coming true. I'd have three screaming children who just wanted to be held and there was one of me and I couldn't do it.”
“And so I started going into fight or flight mode. For me, it was a freeze mode. Like I would just shut down.”
“I felt like I was failing. I felt like I wasn't good enough. I had this dream that I could just clone myself twice and so I could give all three children 100% as myself because I'd gone from having one son who I could give 100% of myself to. I could respond to every cry and every demand. I could contact nap and I could pick him up when he was crying and hold him and soothe him.”
“And then all of a sudden I've got three children who are crying and want to be held and want to sleep on me and just want their mother. And there was one of me and three of them and it was excruciating for me to feel like I couldn't be there for them the way I thought that they needed. And I carried that weight with me 24 hours a day, every single day that I was failing and that I wasn't enough.”
“That's what led to my illness, was that constant state of distress. You know, no one likes hearing their baby cry. And it was inevitable for me that there were times when one or two of my children were crying and I couldn't do anything about that. And it just put me in that fight or flight mode, or in my case, freeze mode, and I would just completely dissociate.”
“This thought felt so real to me! It didn’t just seem like, I wonder if that could happen. It was like, no, this has happened... they felt like visions, they were so vivid... I cried in the shower because of that image in my mind and they were so intrusive, they were just flashing into my mind.”
“That was going on for a little while. And then my husband picked up that things were getting pretty stressful at home. And so we got into a routine of him taking the kids out of an afternoon so I could have a break. And this worked well for a few days until I started having some intrusive thoughts about it.”
“So there's two that I remember in particular. The first one was that he'd taken the kids on a walk in the pram and I had this intrusive thought that they'd all been struck by a car and were needing medical assistance and people were trying to help them. And I just, I had to call because this thought felt so real to me! It didn't just seem like, I wonder if that could happen. It was like, no, this has happened.”
“And so I called and he didn't answer. And then my distress levels rose really quickly. Like, I started sweating, I was dizzy. To me, this had become a reality. And so I called again and again and again, and he answered. And the relief that I felt when he answered! And I did say to him, ‘I was worried that you'd all been hit by a car’. And he thought that was a little bit odd, but didn't think too much of it.”
“A few days later, he took them all to the beach. So the babies, I think the babies were in their capsule. And I had gone out to the shops to get something just by myself. And as I was driving home, I had this intrusive thought that my eldest son, who was two and a half at the time, had drowned and that the babies were on the beach and strangers were with them. And my husband was in the water trying to find him. And these images were so vivid in my mind.”
“And so again, I started calling and calling and calling. I think I called about twelve times because my husband was obviously busy with the kids at the beach, but he wasn't answering. So in my mind that reality was coming true. And I didn't get relief until I heard his voice to say that everything was fine.
“So those were the two most prominent intrusive thoughts that I had that I can remember. I definitely had more. Yeah, but those were the most intense.”
“A few weeks passed, I was still pretty anxious and still stressing quite a lot. And we were out in the backyard one day and my son Julian was just standing next to me and I've just reached out to him and I felt a lump in his neck that sent me into immediate fight or flight mode.”
“I was panicked. I asked my husband what he thought it was and he said, ‘oh, I don't know’. I called my mum over, who's a nurse, and she didn't seem too concerned about it. I'd messaged friends and said, ‘oh, I found a lump in Julian's neck. Can you feel any lumps in your children's necks?’ My sister came over and I asked her to feel her daughter's neck and she said she felt the same lump in the same place, but that wasn't enough for me.”
“So that night I was in the shower and I was just thinking about Julian and that lump on his neck. And I convinced myself that he had cancer. And I was having all of these, they felt like visions, they were so vivid! It felt like a memory that I was reliving of him on the hospital bed, taking his last breath. And I cried in the shower because of that image in my mind and they were so intrusive, they were just flashing into my mind.”
“So I took him to the doctors and the doctor said that she wasn't concerned, that it felt like a regular lymph node. And with young children, you can usually feel those lymph nodes in their neck. But she gave me a referral to an ultrasound anyway. But her reassurance was enough for me at that point that I didn't take it any further.”
“But I had gastro. It lasted under a week, but I became convinced that it was something more sinister. My mind was convinced that I had cancer and that I was dying and that I was going to be leaving my children. Again, it's all fear related to something happening to me or my children or my husband. And again I've gone back to the doctor and asked for reassurance, which I got. And she told me to give it another five or so days. And if it doesn't clear up by then, she'd be more than happy to refer me on. But it did clear up.”
“But at this point, I'd been to the doctor's, like, twice in two weeks about the two things. And so I think at this point, red flags were going on.”
“I’m not an angry person by any kind. I’ve never experienced that kind of anger or rage before. And I was scared. I was really scared.”
“The next time I went back to her [the GP], was for the boys four month needles. And that appointment quickly turned from an appointment about them to a referral for me to the acute care team and a call to my husband to say that I need to be on bed rest and a prescription to help me sleep.”
“So the morning of the needles, I had to get Julian to daycare. The babies were just so unsettled. They weren't sleeping, I wasn't coping. I knew I had a deadline to get to, and I just had this insane rage come over me. All the kids were screaming and I just felt like picking up a bouncer - there wasn't a baby in the bouncer, it was just sitting there, the babies were on their twin pillow, Julian was in his room or something, but everyone was screaming! And I just felt like picking up the bouncer and throwing it through our window.”
“I didn't do it, but I immediately called my husband and I said, ‘you need to come home. I'm not okay’. I'm not an angry person by any kind. I've never experienced that kind of anger or rage before. And I was scared. I was really scared - I'm getting goosebumps - I could feel that intensity of rage.”
“And so my husband came home and he helped get the kids organised and gave me some time to regulate. And he ended up taking Julian to daycare and helped get the twins to sleep with me and then left to go back to work. And so it was up to me to get the boys to their four month needles.”
“So I did bring that up at the appointment, which is another reason why I'm sure she flagged that I wasn't doing very well. So from there, she did refer me to the local district's acute care team. She called my husband to let him know that I needed to go on bed rest. She prescribed me medication to help me sleep, and she referred me to a psychologist, and she also booked in appointments with her every second day to check in with me until the acute care team took over.”
“I pretty much spent that whole weekend in bed taking the medication as needed. My husband was incredible. I think maybe, in a way, he was somewhat relieved because I think he could see that things were going not quite well, but he didn't know what to do.”
“I knew that part of me was unwell. But this was also a gut instinct that, no, what I’m seeing isn’t normal. I’m not making this up... This whole time, I was battling the thought, ‘have I lost my mind? Am I just imagining? Am I making it up that this is abnormal?”
Jess’s intrusions increased in severity and shifted to health-related concerns, although this was complicated by the fact that one of her twins did have a diagnosed medical condition.
“What makes it complicated is that not many people believed me. So every time he would wake up, think of a startle reflex, but he would do that repetitively, like, 10-15 times in a row. And anytime he would be under his play mat and he'd try and bring his arms to midline, his arms would involuntarily slam back down. And I started noticing patterns to it.”
“It wasn't a startle reflex to me. I just knew that there was something different happening. I’d taken him to my doctor and she said it looked like a startle reflex, but, you know, I had his twin to compare to, and I also had my eldest son to compare to, and they just never done anything like this.”
“I took him to ED. The nurse came over and she said, ‘why are you here?’ And I said, ‘my son is making abnormal movements’. And she said, well, he looks fine to me right now’. I said, ‘yes, he is. He's not making them, but I don't know if they're seizures.’ I showed her a video and she said, ‘have you ever seen a startle reflex?’”
“And I said, ‘well, have you seen a startle reflex happen 10-15 times in a row within a minute? Have you seen it happen when the child tries to play with the toy at midline and their arms just slam back down?’ And she said, ‘okay, we're just letting you know it's going to be a really long wait. We're really busy here tonight.’ And then one of the doctors came over, and I overheard her saying, ‘oh, over there is for a startle reflex.’ And I just burst into tears.”
“I felt so invalidated. And I went home. And it was such a difficult thing, because I knew that part of me was unwell. But this was also a gut instinct that, no, what I'm seeing isn't normal. I'm not making this up.”
“And so that was on Thursday, and then might have been Saturday night or Monday night, I can't quite remember. My husband had just got home from work, and I'd been seeing my son do this all day. I'd been recording videos of it. It was just so evident that this was not a normal thing to be happening. And I said, ‘I'm going back. I don't care what anyone says. I want him to be reviewed by a doctor.’”
“So we went back to the ED department, and a doctor came over pretty quickly, and I said, ‘look, my son's having abnormal movements. I don't know if it’s seizures, I don't know what it is, but I don't think they look normal.’ I showed him videos, and immediately he was concerned, and he said, ‘you're right. This looks abnormal.’”
“They immediately took us back and put us in a room and started running tests, and got a neurologist to review him. We ended up being admitted. He got an EEG to rule out seizure activity, which they did. They said it was benign myoclonus jerks. He's going to outgrow them, but benign. So they couldn't find a cause for them.”
“That was really overwhelming as well, because the relief I felt when I came home from the hospital with Louie was not only that he was okay and that he was going to outgrow these movements, but also that I was right. This whole time, I was battling the thought, ‘have I lost my mind? Am I just imagining? Am I making it up that this is abnormal?’”
“And for the doctor to take it seriously immediately, for a paediatric neurologist to get involved, it just was almost validating that my mother's instinct was still there.”
“When I couldn’t see him, when I couldn’t see what type of movements he was making, when I couldn’t see what he was doing, if he was out of my line of sight, I’d have a panic attack. Like, I just became fixated on watching him... I couldn’t shake it. I was obsessively checking him every single day.”
While Jess was relieved about her son’s diagnosis and about finally being believed, the intrusive thoughts and obsessions about these movements only escalated.
“So abnormal jerky movements can be a sign of cerebral palsy. My son rolled over really early. I didn't think too much of it, but I obviously Googled it, and it came up ‘cerebral palsy’. And I thought, ‘oh, no way’. But then my mind started kind of fixating on it, and so I started becoming a little bit obsessed with him meeting milestones and his reflexes and his tone in his muscles. Not that I am qualified to do any of those checks, but just because he had rolled over early and I'd Googled that and it came up with that, I was like, ‘oh, that's something I've got to be on alert for.’”
“And when we went to the hospital for these abnormal movements, my son was drooling a lot. And the nurse said, ‘oh, does he always drool like that?’ And I said, ‘yeah, he does, but his brother does too.’ But that was a red flag for me, because in all of my research on Google about cerebral palsy, excessive drooling can be a sign. And then when he did get admitted, and they were checking his reflexes and checking his tone, they mentioned to me that they were screening for cerebral palsy.”
“And after the EEG came back, and after the paediatrician and the paediatric neurologist reviewed him, they said that they don't think he has cerebral palsy and it's benign myoclonus jerks. For some reason, that wasn't enough reassurance for me, that he didn't have it. So I became really, really obsessed with his development and his movements.”
“And this is where I started having panic attacks. When I couldn't see him, when I couldn't see what type of movements he was making, when I couldn't see what he was doing, if he was out of my line of sight, I'd have a panic attack.”
“I just became fixated on watching him. It came from a place of extreme stress, where my OCD just had me obsessed with the notion that Louie had cerebral palsy. I couldn't shake it. I was obsessively checking him every single day, his reflexes, his movements, his milestones, all of that, because I was just so terrified that they had missed it and that he wouldn't get a diagnosis until much later on, and then that would impact him in some way.”
“So this continued for a couple of weeks. It got out of control.”
“As I progressed and my obsessions became more severe, I actually started avoiding caring for my kids... I’d come into the bedroom and have a sleep because sleep felt like my only escape from the distress I was feeling.”
“My sleep at night got a lot worse. I was waking a lot at night, and I couldn't go back to sleep. I was stressing. I was taking a really long time to fall asleep. But as I progressed and my obsessions became more severe, I actually started avoiding caring for my kids.”
“If my husband was home, I'd ask to go have a rest, and I'd come into the bedroom and have a sleep because sleep felt like my only escape from the distress I was feeling. And that's, I guess, linked into my panic attacks as well, because I would try to fall asleep at night, but then I would have recurrent panic attacks, thinking of having to wake up the next morning and go through another day of feeling so distressed.”
“I had just come into the care of the acute care team at this point… So the acute care team were coming out twice a week and also calling me every single day because I was acutely unwell. And it was very evident to them that I wasn't doing very well.”
“And then I had this appointment with the psychologist, and she diagnosed me with OCD. And I thought, ‘oh, I don't think so’. It doesn't really seem very fitting. But, you know, I only had the layperson's understanding of what OCD is, the stereotypical OCD. So I didn't really believe her.”
“I guess at the very crux of everything, everything that I went through and everything that I was worried about and all of my obsessions, at the core of all of that was this deep seated fear that I had done something to unintentionally harm my children and that I was doing something wrong and that I was causing some kind of harm to my children. That was at the core of everything, this huge fear.”
“My mental health nurse, she was coming over weekly, sometimes twice weekly at this point, because I was in the very acute phase of my illness, and she had come over for one of her routine visits. And I remember so clearly exactly where I was in my house, and I was watching the babies, and I just looked up at her and I said, ‘do you think the babies know that I'm their mother?’”
“And she paused for a second and then obviously reassured me that they do. And we did a little bit of work around that, but I just, I kept going with it.”
“And for her, looking back and having spoken to her afterwards, that was a really big red flag for her that something was happening.”
“That disconnect between me and my babies was really the first huge red flag and warning sign that things were going downhill pretty fast… I was really questioning whether they knew who I was and whether I was actually their mother. I knew that I had birthed them and I knew that they had grown inside of me. But to me, at this point in my journey, that's where it ended and I was questioning their bond with me, their attachment to me.”
“I guess at the very crux of everything, everything that I went through and everything that I was worried about and all of my obsessions, at the core of all of that was this deep seated fear that I had done something to unintentionally harm my children and that I was doing something wrong and that I was causing some kind of harm to my children. That was at the core of everything, this huge fear.”
“I just felt like it was my fault and I was doing something wrong. I wasn't good enough. I wasn't enough for my children.”
“And the week following that appointment, the acute care team was calling me every single day to check in.”
“And I continued with the acute care team and had an appointment booked with my psychologist for two weeks time. But within those two weeks, I experienced an episode of psychosis.”
“She came over one day and I told her everything that’s happened and her face kind of changed...”
“So the first thing that happened was I saw a face pop up on my phone, and it was a featureless male face, but it just looked like he was watching me. And I thought that was really weird. And I moved past it and I went to go back to it and it was gone. But this happened a couple of times and I've never had that happen in my entire life.”
“And then the second part of the psychosis was that I started to believe that there was like an entity or a bad presence in our house. And I'm not a spiritual person, so that is very off centre for me to fall so far into a belief that I don't feel safe in the house because there's an entity there. I called my husband one night when he was at work and told him to come home because I didn't feel safe, that there was something here.”
“And then the third part of my psychosis was that I started talking to loved ones of mine that had passed away… sometimes I will just let them know that I miss them or I love them, but this was really different. And I started hearing them talk back and it was very clear as well. Like, I could hear them communicating back with me. And this went on for about a week, and then I came out of it.”
“And it was my appointment with my acute mental health care worker… so she came over one day and I told her everything that's happened and her face kind of changed. I could tell that she got a bit concerned and then she agreed that I'd had an episode of psychosis.”
Jess’s mental health worker was so concerned that she immediately called Jess’s husband and recommended she be admitted to a mother-and-baby unit (MBU). However, at the time, Jess was organising her sister’s hens, meaning she declined the MBU admission.
“I look back on it now and I think, ‘I don't know how I managed any of this in amongst all of this that was going on’. My memory is fuzzy and I don't remember functioning at all to that level. But apparently, yes, I'd organised my sister's entire hens.”
“I was to be admitted to the mother-baby unit the day before my sister's hens. I felt like I needed to be there to execute everything and to make sure that it was perfect. I didn't want to let my sister down by going to a mother-baby unit, you know, a psychiatric hospital on the weekend of her hens, the one weekend of her entire life that's all about her. I didn't want to make it about me, so I declined that spot at the mother-baby unit and decided to go on the hens.”
“It was a really difficult weekend. I spent the morning on the phone to my mental health worker crying, saying that ‘I couldn't do it. How am I going to get through? I couldn't leave the babies.’ I was really, really distressed and she advised me to take my PRN as needed and just go gentle on myself, which I did.”
“At the time that I was on the phone, two of the other bridesmaids showed up and heard me in that state… so with that, I had that support over the weekend, that they knew that I wasn't in a good place and they could compensate and support me when I needed them.”
“So [my husband] was sending through photos and letting me know that everything was okay, but all I was doing was watching the live version of those photos, looking for any abnormal movements or twitches or anything.”
“I felt lost coming back home. And I just didn’t feel connected to my home or my family. Like, I didn’t feel connected to anything. I just felt really, really lost. And the panic attacks were happening, the anxiety was out of control. And the next thing I remember was driving down to the Prince Alfred hospital in Sydney to the mother-baby unit.”
“I do remember coming back from the hens and feeling a little out of place. That was the first time that I'd really spent time away from the kids and I felt lost coming back home. And I just didn't feel connected to my home or my family. Like, I didn't feel connected to anything. I just felt really, really lost.”
“And the panic attacks were happening, the anxiety was out of control. And the next thing I remember was driving down to the Prince Alfred hospital in Sydney to the mother-baby unit.”
“I was only there for four days and it felt like weeks, to be honest. It was really confronting going there with twins. I just didn't feel like it was set up for me to succeed. Like, at home, we had everything set up the way we needed to manage with twins. And they were settled into their routines and they knew what was going on. And all of a sudden we were thrown into this new environment.”
“I got there on a Thursday and there's restrictions over the weekend of what doctors you see and what therapies there are. Not really much happened except for the fact that I was admitted to hospital and I had to adjust to this whole new routine and I didn't have much support around me, apart from one night from my husband and I think two nights from my mum, because I wanted my son to have my husband with him, because I didn't want him to go through separation from us again like he did when the babies were in the special care unit.”
“And I just didn't feel like I was coping. And I felt like at home, I was being visited twice a week and called every day by the acute care team. My husband’s work is really flexible, so he could come home if I needed him to, to help out for an hour or so, he could take time off work. My mum was spending a lot of time at home with me and I just felt like that was more conducive to what I needed at that point in time.”
“In hindsight, I absolutely should have gone to the mother-baby unit before my sister's hens. That is when I needed to go. But I guess my love for her and wanting to show up for her just came before all of that. But, yeah, so I got admitted on the Thursday and discharged myself on the Monday.”
“I think it was just really bad timing that I got admitted coming up to the weekend when there was nothing going on and I was just thrown into this, you know, abnormal, foreign, sterile environment, trying to navigate it on my own while I'm in the midst of everything else being disconnected from all the supports that I had when I was at home.”
“And I think I was proud of myself, of recognising that at that time that I knew that the supports that I had in my home were greater than what I was getting at the time of the weekend shift that I was admitted at the MBU. If I was admitted on a Monday, you know, it probably could have been totally different.”
“And what a mistake it was...”
Within three months of leaving the MBU, Jess was discharged from the acute care team to the care of the local perinatal team. Unfortunately, the psychiatrist treating Jess at the time advised her to come off all her medication.
“And what a mistake it was! I should never have come off my medication.”
“I was so excited when it was agreed on that I could come off and that we could trial me being off medication. But in reality, I'd only been well on the medication for a few months, so it really was too soon to even experiment or trial or something like that. But it happened anyway.”
“I stopped all of my medication, I stopped the Latuda [lurasidone], I stopped the venlafaxine, and everything seemed really great for two to three months, and then it wasn't.”
“I returned to work one day a week, and I just spiralled really, really quickly. It was all the obsessional stuff coming back.”
“So I'd always been worried about the twins, Louie and Ari, their size, their weight, their development. You know, they're tiny little things. They're so sweet, but they're tiny. They don't have much hair. Like, they look really young for their age. And that just became an obsession for me. And I started to obsess over the fact that there was something wrong, that they weren't growing the way that they were supposed to be, that there was just something wrong.”
“They always tracked under the 10th percentile, which there has to be babies that are under the 10th percentile, you know, and they're twins so they're always small, but it just always worried me, and I always was worried about their food intake and their calorie intake. And it just… I came off those medications, and within a few months, it just became an obsession, and it got out of control. And that led to my second hospital admission at this time.”
Jess reached out to her psychologist from the acute care team. “I did get through to her, and amazingly enough, she came over within the hour. She could hear how distressed I was. I cannot fault the amount and level and quality of support that I've got from the team that I'm with. I wouldn't be here today if it wasn't for them, truly. So, yeah, she came over and she sat down with me and spoke with me and my husband, and she said that she thought that I needed to go to the local district's mental health facility.”
Unfortunately, the twins were too old for Jess to be admitted to an MBU, which is why she was admitted to a psychiatric ward without her children.
“And I didn't disagree with her because at that moment, the level of distress I felt was exponential. I couldn't break it, and I knew that there was something wrong.”
“I tried to convince them that I was totally fine, which I wasn’t, but I just missed my kids so much, and I felt so lost...”
“I was there for a week. I cried on and off, probably for the first three days.”
“It was here that they prescribed me with instant release quetiapine. And just before that admission, I had a psychiatrist review with my team, and they changed my venlafaxine to fluoxetine, so Prozac. So when I was admitted to the hospital, they continued me on Prozac and Latuda [lurasidone] and that medication change has been the most notable in everything. It's where my obsessional thoughts have really come under control. I've really put a lot of my recovery down to the change to Prozac.”
“There's so many medications out there, and it's not one size fits all. You know, one medication that might work for me might not work for you, or one medication that's worked for someone else will not work for me. And it can really be a painful trial and error, because I trialled other SSRIs and other SNRIs in between those. But the fluoxetine is where I saw the biggest improvement.”
“I'm very sensitive to anything that causes drowsiness and sedatives, which is why the Serequel [quetiapine] worked so well from my doctor after the four months, because it just knocked me out for hours, and that's what it did in the hospital. So I slept a lot of the time that I was there. And then towards the end, I started trying to stay awake more, to get better and to be released.”
“And I think on day four, I tried to convince them that I was totally fine, which I wasn't, but I just missed my kids so much, and I felt so lost being in that environment that I spoke to my husband, and he was really supportive, and they were so beautiful, and he just said that you're there to get better, and if you go there, but you don't really fulfil that purpose, then what have you put yourself through this for? And I thought, ‘okay, that's a really good point. I'll stick it out’. And I did, and I got discharged after a week.”
“It’s so horrible to have an illness that makes your kids your trigger when the foundation of your illness is a fear of anything happening to them.”
“It wasn't like a fairy tale ending. When I got discharged, I came home, and I started experiencing an anxiety that I had never felt before in my entire life. I was just on the verge of a panic attack all day, every day, heart pounding, chest tight, head dizzy, shaking. And there was no trigger for it. It's just what my body was doing.”
“The day after my discharge, my psychologist and a psychiatrist came over to review me after my discharge and for follow-up care. And we were sitting in my living room, and they could tell that I wasn't okay. And I left the living room, and I had a panic attack. And I just stood here panicking, and I didn't know why. I just wasn't coping.”
“And so then they prescribed me beta blockers to help regulate my nervous system and that physiological response to anxiety. And I was on them for about two weeks until that anxiety started to ease.”
“I knew what made me unwell was my obsession over the twins health. And so I was so afraid of developing another obsession like that, just so terrified that something like that would happen again, because it was just horrible. It's so horrible to have an illness that makes your kids your trigger when the foundation of your illness is a fear of anything happening to them.”
“That's been a massive part of my journey and kind of leads to another one of my obsessions. So after I started to become a little bit well again, it kind of all came down on me, what I had experienced and how this has impacted my journey in motherhood and my children's journey in their development and what it must have been like to have a mother who was mentally unwell.”
“I was completely fixated on that, that they didn't have secure attachments and that I had caused harm to them through everything that I'd been through. And that was a lot to work through. That was months of work to get through, and we worked through that. And now where I am now, I have no doubt or concerns about my bond with the children and their bond with me. I'm so confident that we have such an incredible, beautiful attachment and bond, but it has been a journey to recognise that and see that.”
“I had no happy memories with the kids and I forgot what kind of a mother I was. And all I could do was fill in the blanks based on the memories that I had. And for me, it didn’t look very good.”
“I think that ties into when I had lost a lot of my memories from last year. I truly feel like I was robbed of the first year of my baby's lives. My memories were completely distorted and all I remembered was periods where I was unwell and moments where I was going to my room to have a rest, or moments where I was engaging in compulsions and reassurance seeking, when I was having panic attacks, you know, every half an hour, and when I was having obsessions and I couldn't concentrate and I was dizzy and I was on the verge of a panic attack.”
“You know, those are my memories. And I had no happy memories with the kids and I forgot what kind of a mother I was. And all I could do was fill in the blanks based on the memories that I had. And for me, it didn't look very good.”
“And so I had so much grief and trauma about what I'd been through, how it must have impacted the kids. And I look back at photos from that time and I can't remember the moment behind the photos.”
“So some of the work that we did with my psychologist was talk to my partner and talk to my family about what they remember me being like during that time and in and amongst the illness, they still remember me being present and attentive and attuned to my babies, but I don't remember that. And that fed into my fear that I neglected them or that I wasn't the mother that I aspire to be and that I value.”
“You know, I look back at photos and I can see photos of their children and they're smiling and they're happy and there's photos of me with the kids, but I just don't remember those moments. They seem so foreign to me.”
To help process her experience, Jess commenced Eye Movement Desensitization and Reprocessing (EMDR) with her psychologist.
“I don't want to say I was sceptical at first, but, you know, whenever you try something new, you think, ‘oh, is this gonna work? Am I just tapping myself for no reason?’ And it was really therapeutic for me in so many different ways, and we've used it in so many different contexts and settings to target many different things, and it's been so beneficial.”
“So when things would come up where I needed that system regulation, that's when she would introduce it and teach me how to do it myself so I could do it in between sessions.”
“I didn't go back to work after that. I just thought, it's not worth it. I need to focus on getting healthy. It had been over a year since I'd felt my healthy self, and I just had enough. And I thought, I just need to focus on my health.”
“It's been up and down. I feel really good. I feel that I'm the healthiest I've been since before I had Louie and Ari, the twins. But I still have my days, if I'm honest.”
“Only the other night I had some pretty bad anxiety of just ‘what if I wake up unwell again? And what if I wake up tomorrow feeling the way I did last year?’ Because I've just developed this fear of ever having to go through something like that again.”
“It was the worst year of my entire life, and I'm terrified of having to experience another day like that, another hour like that. And so I was trying to fall asleep the other night and my mind just started racing and it was like, ‘what if you wake up tomorrow and you're unwell? Or what if you wake up tomorrow and you can't cope?’”
“Yeah, I still have moments like that, but they're more indicative of my progression. I've come so far that now I just have a fear of what I went through it. Not that I'm going through it, it's that now I can recognise how severe my illness was and I never want to go back there again.”
“If I didn’t have that support, really, honestly... I don’t know where I would be right now... It was another thing we had to work through in therapy, the fact that I needed so much support and was finding it so hard to function during those periods. But it doesn’t change how grateful I am for them.”
“I guess the support really started in the very beginning where I started unravelling, I suppose, and having these periods where I couldn't cope with the chaos and stress that was going around me. And so I’d call my husband in a panic and ask him to come home and help for half an hour.”
“And I'm so grateful. Just, we're so lucky that he has a job where it was flexible and he was able to pop home for half an hour, say all three kids were screaming and I couldn't comfort them all and it was just all unfolding around me and I couldn't get it together. He would be able to pop over and help get things ordered for me or pick up Julian and take him to daycare.”
“My mum lives five minutes away and in the really acute phase of my illness, she would drop everything to come over and help me, I think because she knew how unwell I was, or I just had to give her a call and she would come over and she would be here and she'd take care of the kids while I had asleep.”
“Then during the day and getting Julian into activities or just coming over to help out, my mother in law was really good for that. She would come over and watch the kids while I could just get some work done around the house or just come over to be an extra set of hands to help me.”
“And I just, if I didn't have that support, really, honestly, from my mum has been the biggest, I don't know where I would be right now, because on the days that my husband was at work and my head was spinning, I was having panic attacks, I was shaking just by being around the kids, my mum would come over and I would get to have that rest that I needed.
“It was another thing we had to work through in therapy - the fact that I needed so much support and was finding it so hard to function during those periods. But it doesn't change how grateful I am for them.”
“No one experiences the same journey, but there is help out there for you.”
To conclude our episode, Jess kindly shares what she wishes she could say to other mothers going through this.
“I think ‘speak up’ to anyone that you feel safe with and comfortable with, even if it's not explicit to say that, ‘hey, I'm experiencing XYZ’, but just to share your feelings and your thoughts so you're not alone.”
“And if you have help around you, call on that. Absolutely call on that!”
“It isn't the same journey for everyone. No one experiences the same journey, but there is help out there for you. There are so many resources and there are so many supports, and it can be so hard to sift through and find the right one or get the confidence to say, ‘hey, something's not right. I need help’. But we have to speak up for ourselves.”
“This isn't uncommon. There's nothing wrong with experiencing a perinatal mental illness.”
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