This is a profound birth story that needs to be heard, one of battling a broken system, a life threatening un-diagnosed medical condition, and of coming out the other side triumphant. Ashleigh’s story is one of struggle and strength. I feel this story contains important information for expectant parents and I am honored to share it on my blog. Buckle up, it’s a long one, but so worth the read.

Photos and video by Alex & Meme, edited by Alex.

25th August 2020 was the day I found out I was pregnant with our first baby. My partner, Brendon, and I had only started trying for a baby just a few weeks prior to that. After years of being told that it would be quite difficult for me to get pregnant due to my many health challenges, we were not expecting to fall pregnant so soon. As I stood there looking at those two glorious lines I felt every kind of emotion possible; overjoyed, terrified, excited, anxious, proud and nervous. I was not, however, surprised. I knew I was pregnant long before I took the test. I felt different, and I just had this deep knowing inside of me. This was not the first time I had proven the doctors wrong, and it was certainly not the last.

From the beginning I was determined to have a home birth. It just felt so right for me and fit perfectly with my beliefs and values. I also wanted to do anything possible to avoid the medical system and their need to control and medicalise birth. Unfortunately, due to the Covid Pandemic and the huge amount of babies being born in the same month as my due date, I was unable to obtain a midwife that I clicked with. I also quickly began to realise how expensive a home birth was and how unsure and terrified a home birth made Brendon feel. Unfortunately, a home birth made Brendon feel the same way I felt about a Hospital Birth, so we were kind of in a catch 22. But in the end a home birth wasn’t an option. I cried and cried for about a month over this. I was devastated and terrified. Then I decided that the universe obviously had a plan and that I had to trust that plan. So I did.

Overall my pregnancy was pretty horrendous, and to tell you the truth, was a lot harder than I had ever anticipated. To be honest it was the hardest thing I’ve ever gone through and, if you know me personally, you’ll know I’ve been through some pretty tough times in my short life especially in terms of my health.

To begin with what was just really bad nausea and vomiting which I put down to first trimester “morning” sickness. Everyone kept promising me it would get better after those first 12 weeks and I clung to that hope with all my might. Twelve, Thirteen, Seventeen weeks came and went and I wasn’t getting better, I was getting worse. By this point I wasn’t keeping anything down, not even water, and I had lost 7kg (whilst gaining a bump) putting me at an all time low of 47kg. I reached the half way point of my pregnancy and I was smaller than I had ever been before.

On top of all the nausea and vomiting was pain and lots of it. I was suffering from chronic and severe bladder and kidney pain. I was tested for a UTI at least 20 times - all coming back negative - and, even though I could barely stand up straight most days, the doctors would continue to test me for UTI’s as the only possible explanation and then when the results continued to come back negative, they would continue to just palm me off AGAIN and AGAIN.

I was 22 weeks pregnant when I had my first trip to emergency. I had woken up with that same bladder pain but so much more severe. I couldn’t even roll over let alone sit up. I cried out to Brendon and told him I needed to go to hospital. Knowing how stubborn I am and how much I fight him over going to hospital he practically jumped out of bed knowing full well that it was serious. By the time we were pulling up to hospital I was full of anxiety and doubting myself. The pain had slightly dissipated and I am not the type to play it up or make it out to be worse than it is. I’ve experienced severe pain many times in my life, the kind that makes you fade in and out of consciousness, so when they ask for my pain levels I often say something like a 3 when the average person would probably say 9 or 10. I know what TRUE pain feels like. And my track record within the “health system” is not good. I have been left with many wounds and scars from a lack of empathy and understanding and too often been told it’s just “all in my head”. That doesn’t do much to help you when you’re suffering so my faith and trust in the doctors was zero before I even walked through the door. However, there was a small part of me that hoped, because I was pregnant, they may just for once take me seriously.

Sure enough, once I was actually in emergency, I experienced what I’ve always experienced in a hospital. They belittled me, tested me for a UTI, laughed at me for saying I had kidney pain, (because you know ... I have no medical degree so HOW would I know the pain was coming from my kidneys? *eye roll*) and were ready to send me on my way, but I had to wait several hours for my bloods to come back “just in case”. I was so ready to walk out that door........ then my doctor comes back to tell me that my potassium is “surprisingly and dangerously low” and could be the cause of my pain. I stayed for another 12 hours whilst they pumped me full of potassium and magnesium. Potassium can be quite painful to receive via IV drip, especially if the doctors aren’t experienced in delivering it and use the wrong cannulas which is more common than you’d think as severe potassium deficiency, known as hypokalaemia, is not a common thing. After 12 hours I was starting to lose it emotionally. The way I had been initially treated had brought up so much past trauma and hurt and I just wanted to go home. I discharged myself against medical advice and walked out of there with the doctor behind me bitching loudly about how irresponsible I was. I didn’t care. I just wanted to give them all the big finger and get back to the safety of my home where I didn’t have to justify my pain to anyone.

Whilst all of this was going on I was also feeling completely abandoned by the majority of my friends. Almost all of the people who were most important to me seemed to just disappear from my life and I felt so completely alone. I was so sick by this point that I could barely function at all and no one could even be bothered to send me a message and ask if I was okay. I was sharing online how not okay I really was and still nobody asked. I felt like I was crying out for help and nobody cared. Since talking about this with fellow mamas I’ve realised it seems to be an ongoing issue. Almost every mama I’ve spoken to has had a similar experience during their pregnancy where they have suddenly lost some very long term and dear friends. I’ve come to the conclusion that this is our babes choosing the people they want in their lives before they are even earthside. Having this view has brought me great comfort and made me grateful for the friendships gained rather than bitter about the ones that have been lost. I am super fortunate that one of my greatest friends not only stuck by me but was also pregnant at the same time. She gave birth just 2 weeks before me and it has been a beautiful journey together all the way through. She knows who she is and I want her to know that I am super grateful for her presence in my life.

After my first hospital admission it was pretty downhill from there. The remainder of my
pregnancy I was continually in and out of hospital and I no longer had a choice in the matter. I was having weekly blood tests and too often I would receive a phone call to say ‘please admit yourself to hospital’. Sometimes I was super naughty and would wait a day or so before I admitted myself because I was so upset about having to go back there. Hospital is a horrible place for anyone, but for me it is filled with so much hurt and trauma. I continually felt like I was living in a nightmare and my PTSD was at an all-time high. I should mention that up until this point everyone believed me to have Hyperemesis Gravidarum, also known as HG (very serious morning sickness), and were blaming the Hypokalemia on that solely. I was 38 weeks pregnant and STILL vomiting almost everything I ate and drank including water. I was so malnourished and so depleted. I truly felt like I was dying, and I was. In between hospital admissions I managed to celebrate our Baby Shower, and Brendon and I escaped to Byron Bay for our Baby Moon. I was so stoked that I managed to avoid hospital on these days and I lived it up as much as I could. On the day of my Baby Shower I could barely stand but nobody knew. I was just so incredibly grateful to be celebrating my baby girl. At our Baby Moon I was so weak I knew in my heart I should be in hospital, but I kept it to myself and powered through, determined to live up these last moments as a childless couple.

On what would be my last hospital admission before birth I completely broke down emotionally. It was Easter and I had been there for 4 days with the continuous burning from the Potassium being infused into my veins. Imagine a thousand wasp stings running through your veins. That is how it feels to receive a Potassium Infusion, and it’s not like an Iron Infusion that takes ten minutes. No! It takes hours, and I was having up to ten a day. Sometimes it was so painful that I would cry out and beg them to stop it and give me a break. Over the days my veins became more and more irritated and the infusions became more and more painful. Sometimes my arms would seize up and my body would go into shock from the pain. It was hell. None of what I was going through was normal. To have ten bags of Potassium in a day and have my levels still be too low was completely insane. The craziest part was they would finally get it up to an acceptable level and by the next morning it would all be completely gone again and we would have to start over. During this stay alone I received 65 bags of Potassium, 13 bags of Magnesium and 2 bags of Fluids over the course of 9 days. Potassium deficiency is a huge problem considering that our body organs and heart cannot function without it. They will simply shut down, something my organs had been slowly doing for a very long time even before pregnancy. This process went on for months and months.

After 4 days of laying there in pain and realising that nobody was doing anything to help me long term I broke down. The endocrinologist team were accusing me of being bulimic and blaming me as if it was my own fault. They started locking up my drugs, watching me swallow my pills, checking under my tongue, listening to me going to the toilet, and watching me eat my meals. I felt so violated, so un-trusted, so misjudged and so completely alone. And, as if that weren’t enough, this was all happening during a lock down thanks to the pandemic so apart from Brendon I was not allowed visitors. Brendon works really long hours so I was alone majority of the time. Lucky for me he is an incredibly caring man who went out of his way to visit me both before and after work every single day. I don’t think I would have survived without his support. Brendon could see that I had finally broken. Not only that, but by this stage he was incredibly concerned as to whether I would even make it to the birth of our baby. He was becoming increasingly more and more afraid that he was going to be left a single dad to raise our daughter alone, and I too was starting to feel like I couldn’t hold on much longer. I cried at the thought of not being here to raise my daughter and watch her grow up. I felt so lost.

Out of desperation he sought help from the midwives who were taking care of me and
they too were incredibly concerned for my well being. They informed him of “Ryan’s Rule” which is something that you can invoke if you feel someone’s life is in danger and that they are not getting the care or attention that they require or deserve. Brendon did this the very next day. Now there are a lot of hoops to jump through when you invoke something like this, but thankfully for us it never had to get to that point. The second, and I mean the second, that ‘Ryan’s Rule’ was mentioned, things began to turn around. All of a sudden I had very important people coming to speak to me and getting to know my case. I had teams from almost every department looking into my case trying to figure out what on earth was wrong with me. Where the hell was all of this Potassium going!?! I finally felt like somebody might actually help me.

It was about 4 days later that I was diagnosed with Gitelman Syndrome, an extremely rare and sometimes life-threatening genetic kidney disorder that affects approximately 1 in 40,000 people. Amongst other things, it can cause bladder and kidney pain (*eye roll* just sayin). Because it’s so rare I was suddenly a celebrity. Midwives and doctors from all over the hospital who knew of my story started coming to meet me to ask me all about the juicy details. It was a nice change, but it was also incredibly infuriating and upsetting. Why didn’t anyone care about me BEFORE they knew I had some incredibly rare disorder? And why hadn’t anyone apologised to me for the way that I had been treated before the diagnosis? It was just so wrong. And if that wasn’t enough to deal with already, whilst all of that had been going on I was also being constantly pressured to agree to being induced early or to having a C-Section,
both of which I am highly against unless I believe there to be a legitimate reason, which I did not. My baby during all of this had been perfectly fine the entire pregnancy. She showed zero signs of distress and according to her growth scans was absolutely perfect. “So WHY!?!” I angrily asked the doctor one morning. “Why do I need a C-Section? Tell me why”. The doctor listed off reasons such as “your baby is too small”, “it’s safer”, “we need to get her out so your body can heal” blah blah blah. I was mad. “That’s bullshit” I said. She looked at me in shock. “That’s bullshit and you know it. Every growth scan (and she had many) has said she’s perfect. She is not too small. The renal team who are experienced in my condition have said it’s perfectly safe for me to have a natural delivery and I’ve come this bloody far I’m not bringing her out 2 weeks before she’s ready just for the sake of it so NO, NO I will not be induced and NO I will not have a C-Section! “ I’ve never been so proud of myself. I am not the type to easily stand up for myself and I am certainly not the type to raise my voice. But I had been pushed to my limits, and I was standing up for not only myself but my daughter too. My midwife at the time was so bloody impressed that once the doctor left the room she high fived me and ecstatically shared her enthusiasm for what had just taken place. She was so damn proud and so damn impressed that I had taken a stand and stood up for my rights. Goes to show just how uncommon it is today.

One week later I was finally discharged and it was the greatest bloody day of my life. I booked my maternity photoshoot for the very next day as I had had to cancel the initial date whilst in hospital and I wasn’t taking any chances this time. I could barely stand for more than a few minutes at a time but I was determined to have some beautiful memories of this pregnancy and to capture the good times. Nobody and nothing was standing in my way of enjoying my last few days/ weeks of being pregnant.

Fast forward one week and I was in labour, although I really wasn’t sure at the time, as the intense bladder and kidney pain I had had my entire pregnancy was extremely similar to my labour pains. I had an appointment with my outpatient midwife and I told her I thought labour pains had started a few days ago but I wasn’t sure. She agreed she thought labour had started and she performed a stretch and sweep on me with my permission. I was pretty keen on my babe coming early as I knew it would mean avoiding yet another conversation about induction and c-section and if she was ready, I was ready.

Right from the very beginning I had been telling everyone that she was going to be an early baby and that she would be born on the 3rd of May. I’m an extremely intuitive person and I trust my gut instinct 100%. So much so that I had bought a tonne of baby girls clothes early on in our pregnancy before we had even been informed of the sex *haha*. I just knew.

On May 1st, the day of the stretch and sweep, Brendon arrived home from work to find me in active labour. Although my contractions were incredibly painful and just minutes apart I was chill as f*ck *Haha*. It’s funny to look back on now, but I had so much trust and faith in my body that I was not concerned about getting to hospital at all. I knew I could do this and I trusted in my motherly instinct to get me through it. Brendon on the other hand, was not calm at all. He was racing around, packing the car, and telling me to hurry the f*ck up and get in the car. There I am casually applying makeup in between contractions saying to him ‘just chill, we’ve got ages, everything is going to be fine’. Man if only I knew at that point how LONG I really did have.

We arrived at hospital just before midnight. Honestly the only part of being in labour that I found embarrassing at all was walking through the odd 30 people standing outside of emergency whilst I had contractions and everyone stared at me like I was in some Hollywood movie. I literally closed my eyes as I hobbled inside so I didn’t have to see their long gazing stares.

I was promptly admitted and told I was 4cm dilated and they were happy to take me straight to birth suite. Upon arriving there I had been so terrified that they wouldn’t allow me to have a water birth, my dream birth, due to the hypokalaemia and the fact that I would probably need a cannula. They did insert a cannula, just in case, and I felt my hopes and dreams crashing before me. I decided in that moment that I would ride whatever wave came my way and that all that mattered was that I did my best for myself and my baby girl. Although they were happy for me to go straight to birth suite, because they could see in my birth plan that I wanted a natural birth, I was recommended to labour in an upstairs room until I was super close. The midwife explained to us that once you’re in birth suite you are on “the clock” and she didn’t want me to be pressured into anything that wasn’t necessary (says a lot huh?). It wasn’t a hard choice, I agreed and from there things got serious and everything is a bit blurry.

I think it was about 2 hours later that I was wheeled down to birth suite in a wheel chair. Alex, my beautiful birth photographer, and Brendon set up the room with my birth affirmation cards, oils, crystals, and light projector whilst I laboured in the bath. The second my body hit that water I felt so much relief. Up until that point I had only had a hot shower and birthing ball to help me through the contractions. Once the room was set up Brendon got in the bath with me and from that point on my memory is foggy. I was in and out of consciousness and so in the zone that I had zero idea of anything going on around me.

The hardest point of labour for me was when I suddenly realised that it was daylight outside and just how long I had been at this. Not only had I had been in labour for DAYS before presenting to hospital but now it was full blown daylight outside and the midwives had been telling me I was close for HOURS. I hadn’t slept in 4 days at this point and I was absolutely exhausted. Every couple of hours I was made to get up out of the birth pool and walk around. Harder said than done. A lot of women tend to have a contraction and then have a short break before another one. Not me. Mine just kept coming. Just as one ended another would start and they just kept rolling on in. I was exhausted. I was done. In my birth video you can hear me saying ‘please’ over and over. This was me begging the universe to make it end, begging for it to be over. As I realised it was daylight outside I felt like a part of me gave up. I begged my midwife for an epidural, morphine, anything to make the pain stop. I feel so incredibly blessed and lucky for the birth team I had. My midwife could have so easily swept me up in my desperation and given me the epidural, but instead she reassured me that I was doing an amazing job and that I could keep going. Brendon was the most incredible birth partner. He did everything right. He held me, supported me, and encouraged me. His presence was so paramount to my birth going the way it did, and his love and respect for my birth journey is shown clearly in the photos.

A vital moment during my birth was when my second birth photographer Memé, who is also a doula, took my hand, looked me dead in the eyes and said “you got this mama, you are so strong, you are doing so well, keep going”. It was truly what I needed to hear in that exact moment and her super calm energy really helped to centre and ground me. I was back and I was focused. I’m a huge believer in the universe providing whatever you need and I also believe that everything happens for a reason and at the exact time it is meant for you. Memé was not supposed to be at my birth. She was a backup photographer for Alex and as Alex had somewhere to be I ended up having Alex for the first half of my birth and Memé for the second half. It was honestly so meant to be. They both played their parts and were both needed at different times during my birth. Both energies and both personalities were there when they needed to be. I had longed to have a doula at my birth but because I had already booked and paid for my photographer before realising I couldn’t have any more supports due to covid restrictions, that was something I had had to let go of. And there Memè was, the exact right doula in my time of need. Thank you Universe.

I’d been labouring in the bath for about 9 hours when my midwife took my hand and said “Ash, there’s been a complication, we’re going to need to get you out of the bath. “ Both mine and Brendon’s hearts stopped. All I could think of was ‘I’ve been labouring for THIS long with no pain medication and NOW, NOW you’re going to take me away for a C-Section!?!” I was terrified and panicked. She seemed to take forever to say what she was trying to say! “Your babies done a poo in the womb and that means she’s distressed. We just need to get you out of the bath so we can monitor her”. Oh my gosh the relief I felt as those words came out of her mouth. She kept apologising to me as she knew I really wanted a water birth, but I couldn’t care less at that point, I was just so relieved to not be having a C-Section. I struggled my way out of the bath and basically collapsed on the floor. I was in so much pain.

I looked down and could see her gorgeous full head of hair. Finally, I was getting somewhere. A few minutes passed and suddenly everyone was yelling at me that they could see her hair and that I was so close! I wanted to smack them all in the head and was thinking to myself ‘Yes, I know. I’ve been staring at it for ages you numb nats! “No idea what “numb nats” means but that’s what I was thinking hahaha.

I don’t remember this part at all but somewhere in between being on the floor and giving birth I managed to crawl onto the bed where Brendon took my hand and stared into my eyes so intensely, giving me words of encouragement that I have no memory of, and telling me that he loved me and what an incredible warrior woman I was.

After 277 days of vomiting, pain and sickness, 4 days of labour, 4 days of no sleep, 12 hours of intensely hard yakka and many many hours of feeling like I couldn’t do it anymore, our beautiful baby girl was born at 11.33am on the 2nd of May (so close to my prediction).
I didn’t feel that euphoric feeling, I just felt pain. I lay there shaking. Brendon thought we’d both died and had tears and shock in his eyes. But I looked down to see my beautiful darling girl and honestly I just felt relief that it was over. Then I was told I had to birth the placenta and I wanted to cry *hahaha*. The placenta was birthed at 11.50am, just 17 minutes later. It wasn’t actually that bad. Once you’ve pushed a baby out I don’t think anything compares.

A couple of hours went by and finally I could see again. The cloud of pain and shock was slowly dissipating and I was now staring at this amazing creation with a whole new set of eyes. I was in love. There was that euphoric feeling. I was on cloud 90.

Maia Grace Phoenix was finally here. Phoenix. My girl who rose from the ashes. Who conquered mountains even in the womb. Who proved the doctors wrong and came out a perfect 3.149kg and 50cm long. What a trouper. God I was proud of her. We had instant skin to skin and remained that way for 2hrs before she had her first breast feed and then transferred to skin to skin time with Daddy. Her Placenta remained attached for 3 hours before the cord was cut and we relaxed in the birth suite for 5 hours before the doctor even came to stitch me up. We must have been very lucky that day and I assume it must have been extremely quiet in birth suite as usually they would kick you out of there pretty fast after birth. I was also super surprised that they allowed me to labour for over 9 hours in the birth suite. It’s very uncommon and Memè too was very surprised at how positive my hospital birth had been.

We were moved up to our room and were swarmed by midwives who knew my story. They showered me in compliments telling me what an incredible birth we had had. Everyone was blown away by the fact that I had a spontaneous and physiological birth which I found so incredibly empowering but also so sad. So many women in the hospital system are forced into things that are not necessary. They are not informed of their rights and they just willingly go along with the system and end up with birth trauma. I am eternally grateful that this was not me.

Birth was so incredibly empowering for me. I cannot even begin to describe how empowered and amazing I felt after birth. It’s the most incredible feeling I’ve ever felt and I’m so sad for all the women who miss out on that feeling. I was so proud of myself for sticking it out and doing it pain relief free. Our babies benefit so much from this, another thing that many women are not aware of, and I’m so happy I could give my baby girl the best start to life possible.

During pregnancy I invested in myself and my journey. I read books on pregnancy, birth and postpartum as well as how best to raise my baby. I took a breastfeeding course and I educated myself on my options, my rights, and even researched the beliefs and values I already had just in case I found information that may change my mind.

Now that Maia is here I’m doing amazing. I love being her Mama and I adore motherhood. My health is a lot better and I’m slowly gaining weight back after reaching an all time low of 44kg post birth. I still have weekly blood tests and monthly hospital appointments but compared to before that’s a walk in the park. I feel alive again and I can no longer feel my body shutting down. It’s a lifelong condition and the fight isn’t over but I’ve been fighting my whole life so I guess it’s just my normal. I’m okay with it. I’m just grateful to be here to raise my gorgeous girl. I trusted my mama instincts and they were right. I knew I could do it and I was right. And when it was all said and done the midwives and doctors from all over the hospital came to congratulate me. They were PROUD of me for standing up for myself and they were PROUD of me for proving them wrong. They, like us, are just stuck in a system where they are not allowed to speak their truth and are only allowed to say what the system wants them to say. So learn your rights. Educate yourself. And stand up for yourself and your baby. I know it’s hard. It’s really hard. But nobody else is going to look out for you and your baby more than you, so you have to do it, for yourself and the future generations. Birth is so beautiful if it’s done right.

My pregnancy was the hardest damn thing I’ve ever been through. It was also the best damn thing that’s ever happened to me and it was worth all the energy I had left to stand against the system in order to have the birthing experience that I both desired and deserved. Trust me, you can have what you want if you stand strong. And you deserve it too.

You got this mama! Choose to Fly.

Ashleigh.