Glad to be here ❤️

[KeptSwimming]

MESSAGE FROM APP ADMINS: This post contains distressing information. If you are feeling vulnerable, do take care if reading this post.

My son was born in December 2019 and was very sick at birth. The condition he had (Neonatal Alloimmune Thrombocytopenia or NAIT) would affect 100% of my children; however he was misdiagnosed, so when I became pregnant with my daughter, I did not receive the necessary medical treatment. As a result, my daughter was born with catastrophically low blood platelets and was bleeding throughout her brain. Like her brother, she was taken from me at birth, transferred out of town and spent weeks in the NICU. We relocated and weren’t sure she would make it.

When she was discharged, we went to doctors appointments three times a week, and my days were spent applying intensive PT and OT exercises, administering medication and trying to care for my son (who is only 14 months older). All this was happening during COVID. We discovered that my daughter also had multiple food allergies, and as she was exclusively breastfed and my breasts weren’t responding to the pump, I cut eggs, soy and dairy from my diet and desperately breastfed her every 2-3 hours for about 8 months.

Then we took a fateful trip to Iowa for a family wedding. The first night we were there, my daughter woke up crying, and I went into a two hour full blown psychotic episode—back arched, muscles flexed, distrustful of my husband and paranoid that we would never be able to leave. The next night, I woke up to my daughter crying, and this time, I picked her up and tried to throw her on the floor. Luckily, my husband woke up and tackled me before I could hurt her.

When we got home, the psychosis got worse. I began hallucinating that there was blood on my son. I had olfactory hallucinations that made all food smell rotten and lost 15 pounds in 3 weeks. I ruminated on a narrative that my daughter was inherently bad and meant to die, and in saving her, we had done something unnatural and I was being punished because of it. I convinced myself that if I could lose enough weight, I could walk off into the woods and disappear like how a trunk of tree disappears at a distance.

Fortunately, my husband and friends recognized that I was very unwell. It took a few days, but finally we found a provider who recognized my condition as postpartum psychosis (and not bipolar or schizophrenia). I was put on varying antipsychotics and stayed on those for eight months. It was recommended that I stay at an inpatient psychiatric facility, but I needed to breastfeed our daughter, and mother and baby units just aren’t really a thing in the US. We made a safety plan, my husband took time off work, and we eventually weened my daughter to allow me to get some sleep.

The medications worked quickly, and the hallucinations stopped almost immediately. I’m no longer on antipsychotics but do take a daily SSRI. Besides gaining 50 lbs while on the antipsychotics, I feel well and like myself; however, I haven’t met anyone in person who has had PP and would love to connect with a community that is familiar with this condition. It’s good to feel like I’m well enough to be honest and even give back.

[Rachel_at_APP Partner APP]

Hello KeptSwimming,

It's Rachel here, I'm part of the Peer Support team at the charity Action on Postpartum Psychosis (APP for short). I am so sorry to hear of your experiences with your children being so poorly but also of your experience of Postpartum Psychosis (PP). I'm really glad that you were able to access medical help - and the professionals realised what you were experiencing. And I'm also very glad to hear that the medication worked quite quickly for you.

You are more than welcome here, as you say this is a community all too familiar, sadly, with this condition. But a really wonderful caring place.

I had PP too, back in 2016 after the birth of my first child. As you describe, it can be a fateful experience. I know for myself it was terrifying to experience such an illness completely out of the blue with no previous experience of a mental health challenge before. Complete shock, for me and my entire family. I recovered, with the right help, and I am really glad to hear that you did too. You write so bravely and courageously about what you went through. I am sorry to hear that Mother and Baby Units aren't really a thing in the US. Lets hope they will be one day, I feel very fortunate to have been admitted to one in the UK - they really are remarkable places.

I don't know if you have heard of the US charity Postpartum Support International? The purpose of the organization is to increase awareness among public and professional communities about the emotional changes that women experience during pregnancy and postpartum. They also have a helpline and also a team of Peer Support volunteers. Here is the link which might be useful if you haven't heard of them before: postpartum.net/

Thank you for writing, take care. I'm sure others will be glad to write and share this space with you.

Rachel x

[KeptSwimming in reply to Rachel_at_APP]

Hi Rachel. Thank you for your kind words. I apologize if my post was triggering or otherwise inappropriate for this forum.

I do know about Postpartum Support International and am a volunteer with Postpartum Support Virginia. However, strangely, I have felt more connected to UK organizations because of your commitment to providing MBUs (I’m so interested in how that came about and desperate for a similar development in the US) and because the ONLY charity that is currently advocating for families impacted by NAIT is based in the UK. I also admire your very public PP awareness campaign.

Most importantly, I’m glad you recovered from PP and are well. This is such a terrible, redefining experience.

[Rachel_at_APP Partner APP in reply to KeptSwimming]

Morning KeptSwimming, No apology needed you are absolutely most welcome. As I mentioned in my message, we sometimes add the wording I have to posts to help people navigate what they are happy to read or perhaps might need more time to look at.

Thank you for sharing as you have. I am sorry that the US haven't yet developed care into providing MBU's. APP has always advocated for keeping mums and babies together, so in time, perhaps the research evidence will help others understand the benefit of Mother and Baby Units elsewhere too. APP still campaigns for a Mother and Baby Unit in Northern Ireland.

I am really glad you're in touch with Postpartum Support International, and that you volunteer too that's wonderful. I started as a volunteer with APP a few years ago now. The training day alone was one of the most impactful times for me, and I have wonderful memories of that day meeting other women face to face for the first time.

Take care, Rachel x

[Maria_at_APP Moderator]

Hello KeptSwimming, welcome to the forum, I am sorry to read that you experienced postpartum psychosis, but glad that you are now feeling well in yourself.

I had pp in 2018 after the birth of my eldest. It was such a shock for me and my family. We were not aware of such condition and were completely blindsided. I had 3 visits to A&E before I was admitted to a general psychiatric ward for 10 days. At that time I was too unwell to be in an MBU. I wasn't eating or sleeping, went catatonic for a few hours and was very loud and strong, but with moments of awareness in between. I was then transferred to an MBU where I could say my recovery started. I was discharged after 2 and a half months and continued to recover at home. It is a long recovery process as you know.

I am really glad you found us and you shared your story here. I cannot stress enough how vital it was for me to share with other mums who get it.

Take very good care,

Maria

[KatMax]

Hi KeptSwimming,

One of my friends gave me a badge that says “just keep swimming” with an image of a woman crying and an ocean behind her. I’m so glad you’re here. I just joined recently and am overwhelmed by learning about others’ experiences, and the support.

I am in the US too and my pp back in august of 2022 definitely confused doctors. No one really knew what happened to me. I went inpatient three times throughout the course of the year, each time making me feel worse, like I was about to be, or perhaps already stuck, in a torturous cycle of in and outpatient for the rest of my life. Especially in the US, that’s not where you want to be.

I am beyond glad for you that you have recovered so well, and that it sounds like you know this was not your fault (something I’m still working on). So - you are already an inspiration to me.

If you ever decide to start an MBU here in the states, hit me up I’m still sorting through some mental health issues, but I’m absolutely open (and perhaps can’t avoid) letting this experience redirect my journey towards something much larger than myself, such as helping other mothers through this hell in a comfortable place where they are not separated from their baby. I did get to see my son from time to time in the general psych wards I was in (except when I got COVID during my second hospitalization- pure torture) but it was a far cry from being in an MBU. (I do know there is one MBU in NC but I heard from an NP recently that she sent a mother there and that mother who desperately needed help - and had relocated her whole family from MA - was discharged after only 3 days against her will. They don’t want you to stay).

Being with my son outside the hospital and through my recovery has been pretty much the only thing that’s convinced me I’m not in hell- because there’s no way hell would let me have my son. So being his mother has been lifesaving for me. I’m all for the reunifications of mothers and babies, it’s absolutely essential for healing.

[Survivedwithcolor in reply to KatMax]

I’ve heard a couple people mention MBU’s here in the US, but I can’t remember where and I know there aren’t many. I recently came across an ad for an MBU day program, partial hospitalization in Reno. Most psych units, you are correct, they discharge you just as soon as you can stand up and aren’t actively hallucinating, or your insurance stops paying, whichever comes first. I probably needed several months and got two weeks. I had many medication issues and no regular access to a psychiatrist so had to be admitted several more times to try to adjust things. Many many problems with the US system and especially in rural areas where there’s so little access to treatment. The UK programs sound very far ahead when it comes to PP treatment.

[Survivedwithcolor]

I appreciate you sharing your story. I am also in the US and had PP about 22 years ago after the birth of my second child. Thinking of all I went through, I can't even imagine having to deal with my children being so ill on top of my mental condition. My heart goes out to you and I hope your children are doing better now. My children were thankfully well, and that may have been why I turned the illness onto myself and blamed myself for not being well and able to cope. I became very suicidal. I too was not hospitalized until my baby was older, because the symptoms I had were not recognized for a long time. I'm also a person possessed with the ability to remain fairly functional during hard times; I tell people I'm a lot like a cat, I look like I'm doing ok until I'm critically ill. The turning point came for me when my daughter quit nursing at ten months old. I had been having symptoms of psychosis before that and was not doing at all well, but after she quit nursing, it was like a light switch flipped. Within 24 hours I was actively hallucinating, terrified of everything and became catatonic. It was then that my husband got scared and took me to the hospital, where I was finally admitted.

I really get the medication issue. Once hospitalized they put me on antipsychotics, and all kinds of other medications to combat the side effects of the first medications. The first day I went back to work I got about 1/4 mile down the road and realized that I really shouldn't be driving. I was misdiagnosed and spent many years on those antipsychotics, and gained 100 pounds. I didn't fully come off them until just recently, and then discovered that the doctors were wrong, I didn't have a permanent psychotic disorder. I didn't have PP that became permanent, which is what they told me. I had postpartum psychosis, and bipolar 2. I do still take a couple meds for bipolar disorder, but just low doses now. I've lost 55 pounds and still working on it with Weight Watchers and a local fitness program for people over 55.

What I like so much about hearing other stories is that they really validate my own and let me know that what I experienced was real and I was not wrong. I have spent 21 years totally alone with this until I finally discovered PSI and APP last year. I have also never met another survivor in person, and hadn't even had an opportunity to share with someone until I found this forum. We all have much in common. I've become involved with PSI in my state and am working on volunteer training also. I hope to become a peer coordinator later this spring. We have a lot going on right now but I'm learning more and more all the time.

A hug for you, and welcome.

[MotherOfBears in reply to Survivedwithcolor]

I’m glad that you have found this forum now and can find some peace from being connected to other women who have had PP

[The_Wes_Anderson_Fan Volunteer]

Hello KeptSwimming

Wow, you've really had a tough time. How are your children now, is their health stable? I don't know much about the condition.

It's tough looking after two young children, but if they are unwell too, then that's very hard. Throw in covid and you've done amazingly to cope with all this.

It's great to hear that your husband is so strong and supportive and that you have good family and friends around you.

Thank goodness that you responded to the medication so well. It took me a really long time to feel myself again.

I had post partum psychosis after I had my daughter 21 years ago and I had never spoken to any other PP survivors until I came across APP two years ago.

I think your honest description will help some people.

Please keep communicating on here. We've all been through the same thing and happy to chat about it.

Lots of love. Reach out and accept as much help as you can, you need and deserve it X

[MotherOfBears]

My heart goes out to you, sorry you had to go through such a terrible experience. I hope your children are doing well now.

I’m pleased that you have found this place and hope that it will bring you some comfort and understanding