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  • Writer's pictureZoltan Mende

Neurodiversity Celebration Week Guest Blog Series

Author, Harriet Smith

By Harriet Smith. There is so much information out there about pregnancy, birth, and early parenthood that one could be forgiven for thinking it’s a known quantity. But until you experience it for yourself, you really have no idea how impactful it will be for you. It’s often only postpartum that you may find yourself questioning everything you had ever been led to believe, and finding it all wanting. 

As a neurodiverse birthing person I found that from the start of my care in pregnancy, all control seemed to be completely in the hands of others and I had no idea I was even allowed to reach for it. I must admit that fear kept me from seeking a formal diagnosis for many years, so I did not go into my Obstetrician’s office saying “hey, these are my brain tangles, please don’t make them worse,” but now as a parent I’m finally on a journey to getting the recognition and diagnosis I deserve. Maybe had I been able to confidently say what I needed to support me, things would have been different, and I did have a very calm and kind Obstetrician so that is possible, however I cannot say for sure. 

I identify as LGBTQIA+, queer specifically, but I know people like a clearer label than that, which for me would be bi/pansexual. I’m a cisgender woman in a relationship with a cisgender woman. So I was always going to need assisted reproductive technology (ART) to have a baby. However at 23 years old a very serious and deeply traumatic series of misdiagnoses, mistreatment, medical negligence, and generally horrific surgery left me infertile. A fact I did not find out until almost a decade later when I was finally in a safe relationship and ready to start a family. 

As a walking talking example of “good girl syndrome” I previously did not like to disappoint people. I grew up firmly believing that I should be seen and not heard and should never make waves. I can mask every aspect of who I am remarkably well, and until recently I have done so. Add that to a spicy cocktail of neurodiversity, some PTSD from a previous abusive relationship, childhood trauma I didn’t even know I was carrying at the time, and the fear and horror of infertility trauma, and you can probably start to imagine the shell of a human who began receiving pregnancy care. 

I was diligent with nutrition and movement. I followed all the rules of being a pregnant person to the letter. I kept all my paperwork in neat plastic wallets in a ring binder and showed up early to every appointment. When local lockdown hit I stayed within my local government area as advised and conducted appointments with my Obstetrician who was two hours away over Zoom. I even asked her for a referral to a local imaging clinic to have an extra scan that wasn’t part of the scheduling, in lieu of being able to hear my baby’s heartbeat via doppler at her office. Every time I did see her in person she’d commend me on being so healthy, congratulate my textbook pregnancy, and celebrate my “perfect bump”. I was getting great results, impressing the grown up (I was 34, for reference!), not rocking the boat. 

Here’s the thing though, I feel that nobody ever asked me what I want. Due to my past surgical history people had always said I’d probably need a Caesarian section to have a baby, even my partner who is a theatre nurse felt it would be the right choice. So when in our very first appointment the Obstetrician asked, I just sheepishly looked to my partner for guidance and said “I think maybe an elective because of my history?” She made a note on my paperwork and said that I’d be booked in at 39 weeks and that was that. It was never questioned. I think that’s because medical health professionals can’t be seen to lead you in any particular direction to ensure they have no liability. But I feel so let down by this. I think a neurotypical person would probably have a lot less trouble in not only knowing what they want and being able to recognise that, but in standing up and asking for it. 

In the weeks leading up to my baby’s birth I was getting really worried and I mentioned to my partner that I thought I shouldn’t have an elective. She just told me that our Obstetrician probably wouldn’t mind. But I had no idea what to do about it. So I did nothing. I just waited for the date to roll around. I didn’t know how to advocate for myself, I didn’t even know that I could. So I didn’t. I felt trapped and I didn’t want to make a fuss or interrupt everyone’s plans for Christmas. 

On the morning of my elective there was a mix up at the hospital and they told me they wouldn’t be able to give me a private room and therefore my partner wouldn’t be able to stay. We had specifically booked this because living two hours away, it just made the most sense. Plus being a queer couple with a 20 year age difference, it can sometimes be uncomfortable and exhausting to have to come out over and over again. But to be honest I didn’t mind all that much. I was so excited to meet my baby and again, I didn’t want to make any waves. Luckily my partner did and she spoke up until we ended up with the promise of a private room post birth. 

Down we went to theatre and started to meet everyone. Something I struggled with a bit from the start that process was how casual everyone was. The Obstetrician brought her handbag into the theatre suite, for example. Now I know they have all the procedures in place to keep things sterile and safe, but it still felt uncomfortable to me. Rationalising and fighting against my OCD, anxiety, and autism is much harder under stress. But I pressed on. The casual vibe of all the staff was a bit unnerving. I know it’s their job and a routine elective C-section is probably a lovely breeze of a job for them, so chatting and laughing and enjoying their work isn’t unreasonable. But I felt like just a body on a table to be operated on and moved out. They put on music and discussed what playlist it should be, but never once asked me if there was something I would like to listen to in the most important moment of my life to date. I don’t even remember what they played now, and I remember minute details across my senses in all moments of life, so I’m not sure why my brain has decided to block that out as some kind of protection measure. But there we go. If breaks my heart not knowing what, if anything, was playing when my son came into the world. I actually think they may have stopped the music, but I can't be sure. 

I’m a details person and I was really interested in watching the procedure. I could see a little bit of reflection in the light above me, but they must have noticed and shifted the sheet so I no longer could. So I had to wait until they dropped the sheet to deliver my baby. But then I saw him and I heard him cry and I just couldn’t quite believe it, the joy and love and connection I felt was instant. But the bright lights and the strange smells and the cold air must have been so horrific for my little baby, in stark contrast to the safety and warmth and dark of the comfort he was not yet ready to leave. These thoughts have haunted me ever since, my poor baby forcibly removed from his world. It was all a lot for my senses, I cannot overcome the guilt of subjecting my precious baby to that. 

They wrapped my son in a towel and placed him on my chest and his little hand reached out for me and found my face, where our skin connected. My partner took his other hand. He was desperately seeking comfort and familiarity, and he found it in me, I know that, but within a couple of minutes he was ripped from my arms again to be measured and for my partner to cut his cord. This was deeply traumatic for me, and honestly it feels so horrifically unnecessary. He was so obviously a healthy baby and why couldn’t that have all waited? I will never understand this. I know that they need to track weight for leaving the hospital, but within the first five minutes of being born seems unnecessary. And we got absolutely no skin to skin because he was then wrapped back up in a blanket to be put back into my arms when we went to recovery. I don’t know how long we were separated for, but it felt like a lifetime as I not only heard his cries, but I felt them, deep inside my soul. As an empath the deep connection to my baby has taken over everything and in those moments my heart just ached. I desperately needed him in my arms, against my skin. I still feel psychological scars from our separation in those long minutes, and suspect I always will. 

The enormity of guilt and shame I felt in the lead up to my baby’s birth meant I hadn’t even looked into a birth photographer. I really wanted to capture his birth, but I was just too ashamed. I didn’t think my partner would be keen anyway, so I just left it. However in the theatre suite our Paediatrician offered to take photos, and I am so glad she did as we have beautiful photos of my son’s first moments and I treasure them, despite my feelings around my own inadequacies bringing him into this world. 

In recovery my body experienced a bit of shock and since my partner is a theatre nurse, she made sure she kept telling the team what I needed. I was just shaking a bit, which wasn’t too scary or unpleasant, I just was constantly afraid they’d separate my baby and me again, and that was terrifying. I didn’t understand that it was reasonably normal and not something to worry about, and so I kept fighting with all my strength against what was happening just to try and keep us together. My partner also insisted the nurses tilt me so I could breastfeed my son. Thank goodness she did that or who knows where I’d have ended up. By then it was already later than it should have been, but at least it happened and my little baby latched on and that part of our journey started. 

Having previously experienced abdominal surgery that saw me nearly die and left in excruciating pain for nearly a decade, it was really frightening immediately after birth and in the hours and days that followed. Initially I was terrified that I’d be in too much pain to take care of my baby, or that I might nearly bleed to death again. Anything that would have separated us filled me with fear. I considered all the stories I’d heard of people being whisked back into theatre and into ICU, spending hours, days, even weeks apart from their newborn. Those may not be rational fears, but they were very real and no one took the time to address them. Nobody even asked how I was feeling beyond my physical pain level, which was extraordinary low. To the point where I’d have said I didn’t have any pain. But I was so scared that it would arrive and leave me a mess. 

I was also prescribed numerous medications, as is standard post surgery, and I was frightened of what that meant for my breastfeeding journey. But no one discussed that with me and I was too scared to ask in case I caused a problem somehow, or was an inconvenience. Not long after leaving the hospital I stopped taking everything so as not to pass it all into my son. But I fear the damage of antibiotics and anti inflammatories would have already been done by the time I was brave enough to stop. And while that might be minimal, if any, no one ever explained it to me and so I remain concerned that my weak choices had so many negative impacts on my sons early days. 

Making myself as small and unobtrusive as possible, masking myself almost entirely, has been such a strong part of my existence that I feel I have been left in tatters. I will never do that again. I have done so much research since becoming a mother that has led me on a journey of self discovery and improvement. I will stand up and fight for my son, so I will stand up and fight for myself. While my experience might not have seemed like anything other than a privileged routine experience from the outside, on the inside it has left scars I fear will never fully heal. 

When my son was a few weeks old I was experiencing pain when breastfeeding and remembered an article my partner had found long before we even started our IVF journey about co nursing. I recalled how it referenced an International Board Certified Lactation Consultant (IBCLC) and thought I’d see if there were any local to me in case they might be able to help. I found one an hour away and desperately sent a message and followed up with a somewhat frantic phone call. Meeting Alissa from Thrive Health and Lactation was so reassuring. Not only did she help us with our breastfeeding journey, she introduced me to a whole world of holistic therapy to assist in all areas of life for both my son and me. Everything from the benefits of body work to help tongue, lip, and cheek ties, to the impact of trauma on gut health, and beyond. Knowing that there are so many moving parts that all need to be working to help our bodies and minds feel peace has been such a relief. I can feel less mad at myself knowing that it takes time and work to heal each little part of me to give myself and my son the best possible life. I also know what to manage to ensure my son avoids some of the things I have endured in life that I’d sooner he not have to. It’s helped empower me to take control so I don’t have to feel so lost again. 

Working with Alissa on our health journey has taught me some valuable lessons. As a neurodiverse person herself, she has been able to explain things to me that make so much sense. Any marginalised person is more likely to receive treatment that is not ideally tailored to them and therefore achieve poorer outcomes. For example, a neurodiverse birthing person (or someone from any other marginalised group) is much more likely to be misunderstood during their treatment journey and not have their needs, such as sensory processing, properly met. The feelings of lack of efficacy in delivering and feeding, along with a lack of autonomy can adversely affect neurodiverse people, who may already face challenges with self concept. Due to miscommunication and misunderstanding, we may also experience increased intervention, which leads to longer recovery times and that by its very nature can damage the chances for lactation. 

This ultimately can lead to loss, grief, and even intergenerational trauma. Birthing people who have experienced any of this are also more likely to encounter challenges with body feeding (breastfeeding / chest feeding) their infants. This often coincides with a trauma response and can be exacerbated with a parent feeling misunderstood or not listened to, therefore unable to advocate for themselves or their child. The knock on effects from this in babies can include undiagnosed tongue ties, which can cause significant issues later on, as well as impacts on the gut microbiome of the infant leading to digestion issues that can have lasting negative consequences if left untreated. This can also damage the bond between the birthing parent and their baby and can even be a contributing factor to mental ill health, such as post partum depression and anxiety. Knowing all this now, I am so glad I fought so hard to bring a positive to my own birth story. 

As a neurodiverse person, I think it’s important that healthcare professionals not only understand the vast array of neurodiversity out there, but that there is no one size fits all way to treat us. Involving us in the discussion about our own care is a good start. Find out what works for the individual, what their triggers are and what they need to feel safe and heard. I also think it’s important for neurodiverse people to know that there are providers out there who understand and who will put them at the centre of their own care. Some providers are even neurodiverse themselves, and let me tell you, that is a thought that fills me with so much hope for us all. 

For me, over two years since my son was born, I’m proudly still breastfeeding, which I have worked hard for, and I have started my own healing path. I booked a birth debrief to work through everything with a caring provider who understands the needs of neurodiverse birthing people. I now know how to advocate for both my son and myself, and I will never take that lightly. 

Carrying and birthing a baby is the most transformative thing a human can experience, so it is only right that each and every birthing person be given the individualised support they deserve. I wish I’d known what I know now at the start of my journey, but I believe with enough passion from providers, the messages of hope and empowerment will eventually reach the people who need it and more birthing people will have stories of joy and calm to start their parenting journeys. 

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