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Neurodiversity Celebration Week Guest Blog Series

by Jess Darnes.



My name is Jess Darnes, I’m a Writer from Bristol, UK; I’m autistic and have ADHD (AuDHD). I also have a physical disability/chronic illness called Hypermobile Ehlers-Danlos Syndrome (hEDS), which affects my joints, digestive system and causes me chronic pain.


I discovered the Neurodivergent Birth Instagram account and podcast fairly recently after coming across Victoria’s article on the AIMS website. It was so helpful to know there’s such a good resource for not only neurodivergent people themselves, but also for midwives and medical professionals to learn how to better assist new mothers that might struggle in a neurotypical setting.


Discovering my neurodivergence

It wasn’t until I was pregnant with my first little one, at age 33, that I realised I might be neurodivergent. I couldn’t sit still, especially towards the last trimester of pregnancy. My mum and husband kept telling me to rest and put my feet up, but I felt like I was being propelled by a motor, needing to do things all the time to keep busy. So, I did some research online and the results brought up ADHD. After giving birth, I spoke to my GP and asked for a referral to be assessed, receiving a diagnosis for combined type ADHD almost a year later in March 2023.


It was at that appointment that the psychiatrist suggested I might also be autistic. My understanding of autism was incredibly limited at that time; I remember asking my husband “will they take the baby away?” because of this potential diagnosis: a ridiculous sounding notion when I think about it now, but it just goes to show how little awareness there is about it in the public sphere. I received an autism diagnosis in January this year, and knowing what I do now about autism, I actually found it quite a relief to hear those words. Finally, I felt like the way I am and how I deal with things in life was validated.


Overcoming birth trauma from my first labour

My first labour and post-delivery experience was quite traumatic. It really affected my mental health and caused me to have anxiety and panic attacks, ultimately culminating in PTSD, something that stuck with me in the background of my whole second pregnancy. I think it was a lack of feeling in control, and like I was a passive participant in it, rather than being the main player in the situation that led me to having these issues. Even with counselling - which was very enlightening and helpful - I still couldn’t quite shake my anxieties around labour.


This made me quite nervous for what might take place the second time around. A friend of mine told me about a birth trauma midwife that she’d seen at our local hospital, and I knew I had to speak to them to try and put these anxieties out of my mind. Despite having to fight to be seen, it was really worth it. Not only did she go through my maternity notes from the previous birth, explaining what had happened and uncovering a few little surprises along the way, she was also acutely aware of how being neurodivergent might affect the birthing experience for me. She helped me put together a birth ‘wellness’ plan that addressed any potential issues I might face, and passed it onto the relevant people to ensure my wishes and needs were respected.


Throwing a spanner in the works

Around 34 weeks, I found out I’d got gestational diabetes (GD). This really threw me for six, as I’d had a negative glucose tolerance test. I grew quite worried that I wouldn’t be able to labour as I wanted, which was to have as ‘natural’ a birth as possible, in a midwife-led centre in a birthing pool, and minimal medical interventions. As such, the build up to the baby arriving was quite stressful and anxiety inducing. I also found the process of being diagnosed with and starting treatment for GD really doesn’t cater for neurodivergent people - for example: because you have to change your diet (often quite drastically), you’re likely to have to give up a number of your “safe foods” and be left in the dark as to what you actually can eat. The other issue I found difficult was remembering to check your blood four times a day, a feat that’s quite challenging for someone with ADHD!


A method of coping I use as a neurodivergent person is to hyperfocus on things that I find interesting and/or challenging. I read so many articles and listened to lots of podcasts on gestational diabetes. Ultimately, I felt empowered, because I was armed with a lot of information about it and could quote some studies that supported the kind of birth I wanted; however, I wouldn’t say that this new knowledge took away any of the anxiety.

I had to see a consultant who specialised in gestational diabetes during those six weeks and dreaded each appointment. One of the main concerns with GD is that the baby can grow too big, and therefore should either be induced or delivered via c-section if you get to term. Having experienced both of these things previously, I was quite scared it would happen again. I needn’t have worried, though, because the consultants were actually very supportive and didn’t push a particular intervention or outcome onto me - a very different experience to my previous pregnancy.


Accepting the inevitable

During the week after the baby’s due date, I had some high days and a few really low ones. I kept having sustained contractions that would last for a number of hours, then dissipate into nothing. This left me feeling really disappointed, as I desperately wanted things to progress before we got to the induction date. Although it was something I really didn’t want, it was looking more and more likely that I’d need an induction to get things started. My anxiety started to spike and I felt very teary in the last couple of days when I thought I was going to end up having a similar time to the birth of my first little girl. Thankfully, it didn’t end up anywhere near as bad as that and was actually a pretty positive experience.


The induction method I was offered was a Cook balloon, as I’d previously had a c-section; the hormone methods aren’t recommended, as they can cause potential scar rupture - an issue that the doctors had already raised with me, as I wanted a VBAC (vaginal birth after c-section). It got to the evening of having this induction and I’d managed to somewhat accept that this would be how things went. I was also pleasantly surprised when we arrived at the hospital that the midwife looking after me had not only read my birth ‘wellbeing’ plan, she was more than willing to bring it all to fruition. She’d also kept in mind that I’m both neurodivergent and have EDS, so tailored her way of doing things to help with this.


My husband and I were allowed to hang out in a private room for 24 hours while the treatment got to work, and we spent the rest of Friday evening watching The Secret Life of Walter Mitty and eating snacks. Sadly, Saturday day time came and went, and despite having another bout of sustained contractions during Friday night, I had barely any all day. It wasn’t until around the 22nd hour that I suddenly felt like things were going to happen - we were watching yet another film (Chef by Jon Favreau) when I stood up and my waters broke. It all ramped up incredibly quickly from there. The time from when my waters first broke until giving birth took less than 5 hours, and the total for active labour was just shy of 2 hours.


Things get real very quickly

The pain was way more intense than what I’d experienced before. I was very conscious of how people in the rooms surrounding ours could more than likely hear me making some very loud, guttural sounds, but it was the only way I could get through the contractions at that point. My TENS machine and the breathing techniques I had been using became somewhat useless by then. At one point, I had a contraction that was so strong it made the rest of my waters ‘pop’ like a balloon had gone off in my belly. By this time, I decided to get on all fours, as that was what I felt my body was telling me to do. It was then I noticed I was bleeding. This made me panic a bit, with the thought of scar rupture being a real possibility. Fearing the worst, I decided to ask for a c-section, as I didn’t want to put my baby at risk. I also really wanted an epidural, as I wasn’t sure I could get through labour with the pain I was experiencing. The induction midwife gave me a slightly funny look, but I think she’d realised what I hadn’t - that the baby was coming too fast for either of those things!


She offered for us to go to the midwife-led centre, where I’d specified I wanted to give birth. However, it was all the other way at the end of the building and I really didn’t think I could make it that far - certainly not without screaming like a banshee the whole way there. I agreed to go to the more medicalised central delivery suite around the corner, and was happy that it’d be over soon if we did have a c-section.


Paying attention to my needs

Straight away, I asked for gas and air (Entonox) to help me through the pain. Upon receiving this, I retreated into myself. I remembered what it was like to take Entonox and let myself ‘ride the high,’ allowing myself to unmask and say whatever came into my head. Keeping my eyes shut for a long portion of the labour really helped me deal with the sensory overload I was going through. My husband also put on a playlist I’d put together especially for labour, which was a great distraction; lots of the staff who came and went complimented us on the choice of songs. One choice I was really glad I made was to not have any students present: we had a very kind student midwife with us last time, but I really wanted to keep the amount of medical staff present to a minimum.


The midwife and doctor who were there for the birth really coached me through it, as did my husband. There were a few times I called out that I couldn’t do it, but they wouldn’t allow me to quit. The majority of the pain gathered in my lower back, particularly my coccyx and SI joints, where I have a weakness from my previous labour. I ended up with a second degree tear and needing an episiotomy to help deliver my little one - something I was quite afraid of prior to going through it - as they needed to use a ventouse method called a ‘kiwi’ to deliver her. When the doctor did the stitches for these, the anaesthetic didn’t entirely work, which is a common problem for people with Ehlers-Danlos Syndrome. She listened when I told her and gave me an extra dose. It wore off quickly, but many people with EDS are ignored and/or dismissed when speaking up about such things, so I was grateful nonetheless.


When my little girl was placed on my chest, I entirely focused on her, blocking out everything else that was happening. As such, I wasn’t aware that I’d lost quite a lot of blood. Later that day, I ended up having a transfusion, as they were worried about how I was doing.


Feeling validated and respected

All in all, the staff were very good at providing for my needs, either from my birth plan or when we requested anything, whether they were aware of my neurodivergence or not. Every midwife and medical professional we dealt with were lovely: they showed great care and took the time to explain things clearly and answer any questions we had, something I really appreciated. Where I’d felt out of control in my last birth, this time left me feeling far more positive. I was also confident enough to decline things, and check they’d done delayed cord clamping, which they had.


We were very fortunate to have been provided a private room post-delivery, too. It was specified in my birth ‘wellbeing’ notes that it wouldn’t be a good idea for me to be on an open ward, as it could potentially be overstimulating and cause me anxiety. The day after being discharged, I had to attend the main delivery ward for an appointment, and I have to say, it wouldn’t be a good place for any woman to have to stay having just given birth, let alone for someone who’s neurodivergent.


Positive decisions going forward

I think that by being aware of my neurodivergence, and understanding myself and the way I react to things so much better now than I did in my previous pregnancy, I was able to advocate for what I needed more confidently. It also helped me to take a moment and ask myself “how do I feel about this?” or say to myself “take a pause, you’re feeling this because of X right now. You need to relax/take a deep breath/speak up for yourself.” I wouldn’t have been able to do that before or even to clearly identify my feelings.


Post-partum, I’ve made the decision not to breastfeed. It may be a somewhat controversial decision, but I was unable to do so last time (due to difficult circumstances) and felt it wasn’t right for us now, either. I decided I had to be kind to myself and say no from the get-go without feeling guilty about it. Bringing up a toddler and trying to navigate the still fairly new diagnoses while looking after a tiny newborn just wouldn’t be good for my mental health.


I’ve felt so much calmer and at peace following this birth. We’re all settling into a new routine, and while I know there will be challenges ahead, I feel much better equipped to deal with them.

 

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