Julia's Story

04 Aug 2022

In loving memory of Millie Grace

"Pregnancy can, unfortunately, be a harrowing and heartbreaking experience for many It's important that people understand how great and also how hard pregnancy can be." Julia – Millie's Mum

After being on the pill since I was much younger, I thought it would take a while to get pregnant after stopping taking it. That it would take some time for it to 'wear off' and pregnancy to come to fruition. I also knew friends and family who had taken some time to conceive once they started trying. When Pete and I began to try and expand our family, we were surprised to find we were pregnant in March, after only trying since January.

I told my close friends and work friends (some of who had already guessed from me burping uncontrollably and loudly every morning in the weeks proceeding). We waited until just before 12 weeks to tell the family and also started hunting for a house to live in. At that stage, we were renting but were beginning to look into buying our first home together. We had a very ambitious plan to find a home and move in before the baby arrived.

At the 12-week scan, we were told everything was normal – we were also told that I had a high likelihood of preeclampsia, something like a 1 in 12 chance and that I should start taking 150mg of aspirin a day as a precaution.    

There was no context given, so we didn't really worry too much. In hindsight, I should have asked more and questioned the doctor further about what this would mean for the pregnancy and my health.  Every story has 1000 hindsight moments, and in our sad story, there are many.      

We went away thinking all was fine and were excited about our following scan at 19 weeks. I had started to feel our baby's movements and was showing, but only slightly. 

I rocked up on a Wednesday morning for my 19-week scan. We were so excited. Super excited! Pete was with me, and the ultrasound appointment must have taken a while to start as Pete was already late by the time we got into the room. The sonographer began to do all the scans, which we felt was exciting. She commented on the fact my bump was very small and asked me if I had eaten breakfast.

She proceeded to scan for what felt like forever – probably 45 minutes in the end. She said she was struggling to get specific organs and body part measurements. She asked me to go eat something, jump around and come back in the hopes that the baby would move and it would make a difference.

Pete had to pop off to work, so I was left to get my sugar rush by myself.

I remember messaging my workmate to let work know I would be longer as the scan needed more time. Mel, probably more clued in than I was, offered to come to the hospital as Pete had left. I honestly hadn't figured out what was going on yet and thought that it was just an issue trying to scan certain body parts (as they had suggested). I went back and waited for about an hour for the sonographer to come back.      

We continued our scan, probably for another half hour – by this time, it was early afternoon, and I had been at the hospital all day. Finally, she came out with it – the baby was small. Smaller than they would expect by 19 weeks, she suggested that I come back the next day when a doctor could scan me and provide more detail. 

That night was horrible. I felt sick and numb, I remember trying to go to sleep and not being able to stop crying. Poor Pete held me and tried to tell me it would be okay. I think I slept a total of 4 hours that night, giving up at some stage and going downstairs to watch television. 

We went in early the next day – we got scanned again – we were told that the baby was too small and then the reasons that a baby could be too small: growth restriction, genetic disorder and genetics (small people = small baby).

This was the start of a 6-week rollercoaster, all the wee, blood, utero fluid tests to try and determine what was going on. I was told on several occasions that they did not expect the baby to survive and that she was likely to pass at any stage. Every morning I lay in bed feeling for movement, a kick, some kind of reassurance that she was still there. She was consistent, if anything, and I felt a little wiggle from her every morning.

Some of the appointments were okay, and some were outright horrible. For one of my many appointments, I took my sister because Pete couldn't attend. This was the first time they broached the subject of terminating the pregnancy and delivering the baby once it had passed away. This information was provided very clinically, almost coldly and left me almost hyperventilating.

The time at home by myself was the worst, both before delivery and after. I didn't really sleep much. I spent a lot of time in the middle of the night awake watching tv, drinking de-caf tea, and trying to feel sleepy or at least feel calmer. Every time I had a shower, I tried to sing to the baby and usually ended up doubled over crying, so furious and shamed that my body wouldn't do what It was supposed to do and supply what this little baby needed.

In my mind, I knew there was nothing wrong with the baby! It was my body holding out, my placenta, my arteries that wouldn't supply the blood and nutrients she needed to grow. I spent a significant amount of time crying on the couch.      

In hindsight, I wish I had more access to support at that point or been offered it, I was miserable, depressed, and felt out of control. Some days I would go to the hospital and get an OK report on progress – some growth, some blood flow, meaning it was possible to keep pushing forward. On other days It would be almost no blood flow, likely high blood pressure. Do we make a call or not?

They started me on Clexane at 20 Weeks, a blood thinner they give for DVT and diabetic patients. It involved a nightly injection into the 'fatty' part of the abdomen. Hilariously I couldn't bring myself to do it. It weirded me out so much Pete had to. It made Pete feel like at least it was something he could do to help give me my injection every night.

I was also taking any vitamin that I could find that might help – things to promote circulation, calcium, anything we hoped would pass nutrients to the baby, however, I suspect they probably didn't. I also made sure I went for a walk once a day, or at least Pete made sure. It was more to drag me out of the house and also what we thought might be good circulation around the hips and hopefully uterus.

By 23 weeks, I was going to the hospital every two days, spending a lot of time in what they call “day stay”, where women with problems could be monitored for a few hours of the day and confirm everything was still okay.

The routine was to go in, get blood taken, get blood pressure taken 3 times over a few hours, pee in a cup for protein and wait to get the all-clear to go home again. On one of the days on the 24th week, I guess things didn't go to plan. Although I felt the same as I had been feeling, after the results came back from the blood drawn, I was taken to another room to discuss the situation with a doctor. 

Basically, my blood pressure had gone up, and there were indicators in my liver and other indicators that the preeclampsia symptoms were kicking in. The doctor told me they wanted to admit me right there and then and have me observed over the next few days, also that it would be worth considering again ending the pregnancy and delivering early to avoid needing to do a classical caesarean, which had its own risks and implications.

I remember crying heaps, feeling like we were losing the battle. Which I guess we were. Again, we were being forced to confront the horrible T word. 

They admitted me, gave me my own room (I suspect to keep my sad self away from the other pregnant mums) and once all the admin and running around was done, Pete crawled onto the bed with me and just cried too. We were tasked with thinking about when to terminate.

They didn't do terminations on a Sunday, so it had to be another day. It is an impossible question to consider, and we felt sick even thinking about it. I think we must have agreed to wait until the next scan to make a decision, and this is how it went on. 

I was put on blood pressure medication which made me very sleepy, and they came and did mine and the baby's vitals every few hours – all through the night too. Pete stayed the whole time, even though he wasn't meant to.

I honestly don't think I could have done it without him. I would have lost it. Every time he left to go home, have a shower or pick things up, I just waited for him to come back. It felt like an unbearable pain to carry by myself. I could only do it if he were there with me. 

At the end of a week, my blood pressure had settled, and my bloods were looking better. They decided to let me go home with medication, my baby was still alive and very slowly growing.  

We had been given a lot of information on the birth of small babies and NICU. This included the risks of lifelong debilitations based on birth weights and ages. We had decided to try and keep the baby in for as long as we could. Another word that haunted us, along with the T word, was ‘viable’. What a viable baby would be, for a normal-sized baby, this might have been 25 weeks, but with Millie's growth restriction, we really needed for it to be longer than that. The baby needed to be at least 500g which we were told would probably occur at the 26-27 week mark. 

We were getting so close! It was also terrifying knowing there was a very high chance that even if we did manage to pull it off, she would have severe and lifelong debilitations. We had to be prepared for that too.

I had a scan at the end of that week with the doctor, and it showed positive blood flow in one artery but reverse blood flow in the other. This meant that blood was actually coming out as opposed to going in.

I hated those scans and listening to the blood flow, even now, the noise immediately triggers anxiety. Our estimated measurements also showed that we were inching towards 500gm, and even with the blood flow issues, the baby was still getting enough oxygen for the time being.  

We decided it was time to look at steroids as there was a chance we might deliver soonish, and it would be good to try and get her lungs going. At this point, I was feeling hopeful, maybe even a bit smug. At 19 weeks, we were told she wouldn't survive, and here we were, almost 6 weeks later, our baby was still alive.

I had gone in for the typical day stay and a scan that morning. We did the scan and had bloods/ pressure and received a 'pass' from the doctor, nothing was better, but nothing was worse. We booked the next scan and day stay appointment, and that was that. We kept around a 2-3 day scanning routine for baby wellbeing and growth.

I headed home to do what I did most days; lie on the couch, feel for movements and try not to feel so miserable or wallow in it, whichever seemed more appropriate at the time. I had been lying on the couch watching a favourite TV series “Buffy The Vampire Slayer” and quilting (I had kept sane or maybe not sane by re-watching the entire series of Buffy while pregnant and hand-sewing a very complicated hedgehog quilt). I decided around midday that I needed to get out of the house, so I went for a walk. I remember it was more challenging than it should have felt, I was tired, and it was an effort. I sometimes felt like this, so I didn't think too much of it. I got home, had some lunch and fell asleep on the couch.

It was longer than a nap and deeper than I would have typically done on the couch. 

I woke up feeling a bit like I had a stitch in my abdomen. I can't remember exactly what time of day it was, but Pete wasn't home yet. It was painful and worrying, I had been so vigilant about the symptoms they told me to watch out for dizziness, and seeing spots. The stitch didn't quite fit into those, I tried to calm myself down and sit with it for a bit, but it got worse. I checked my blood pressure with the home machine, which I did regularly, and it was high, much higher than I had ever read before.

I started to freak out and thought I better check it again, it read even higher, which was predictable considering my state of mind and emotions.

I called Pete and asked when he was going to be home. He said he'd be home soon, so I thought I could show him and discuss the next steps once he got home. I don't think he understood from my tone how scared I was.

The pain proceeded to get worse, it was a sharp stabbing pain in my top right. I took some blood pressure medication to see if that would help. I lost my patience about 15 minutes later and called Pete to tell him either he got home and drove me to the hospital, or I was getting there by other means. I think I was worried he wasn't taking me seriously because something was wrong.

He got there, and we bundled into the car. I was just trying to breathe through it and remain calm but knew there was something very wrong with how I felt. We called the delivery ward to tell them what was happening, I couldn't speak I was so choked up and emotional. Poor Pete had to try and relay what was going on while I tried to explain through crying and gasping. 

Once  through all the admin at the reception desk, a nurse met us and took us to one of the birthing rooms. It's strange and confronting to be in a room full of birthing stuff when you know you shouldn't really be there. They sat me down on the bed and took my blood pressure. I can't remember if they told me what it was, I think it was high but maybe not as high as my home readings due to taking medication before I left.

In hindsight, I think I was in a worse state than I realised. I had the shakes, I knew that. I had had them before I left the house. The type you get when you've cried too hard or are so cold it's entirely out of your control. They strapped on a baby monitor, so we knew she was okay as her heartbeat was strong and normal.

It's interesting the way they approached the next steps because, in my strange and increasingly not well state, I just felt it was a bit routine. They told me I needed to have a catheter, so I let them do that, then they told me I needed to have cannulas, at least two.

They proceeded to try and get the two cannulas in but did a pretty horrid job of it, I think they might have had at least three failed attempts before they called in backup (an anaesthetist) and got the 2 in, which resulted in some pretty impressive bleeding and holes through my arms.

One of the doctors came in to feel my foot reflexes which, again, I didn't understand at the time. Now, I know it was to see how hypertensive I was, which I was a bit. They decided Mag Sol was required to prevent any seizures, Mag Sol burns as it goes into your body, so they put ice on your arm to try and take that pain down, it also makes you feel awful and nauseated. We'd arrived just before 6 pm, and I think it would have been closer to midnight at this stage. Pete needed to move the car (which was parked somewhere it shouldn't have been) and get supplies, and come back. 

The rest of the night is a bit of a blurry nightmare for me. I was trying to sleep, stay calm, not vomit (again) and hear the baby's heartbeat.

We needed to make the decision about resuscitation as we'd definitely be delivering soon.

Our game plan had always been 27 weeks, or over 500gm, we just didn't think we were there. There was a chance that her weight had got there, but it was so slim. They brought in nurses from the NICU to talk to us to help us with the decision. They told us it would have been the smallest baby they would have ever attempted, and they were unsure they even had the tubes small enough to try. 

We opted not to, maybe this was right, maybe it was wrong.

It was a horrible decision to have to make. The next incredibly difficult conversation happened in the early hours of the morning, and the obstetrician on the ward came in to talk to us. My bloods (which they were checking every few hours) had continued to deteriorate. 

They needed to do a classical c-section in the morning, my liver was showing signs it was giving up and my kidneys were showing distress as well. It was rubbing salt in a huge wound, as I had wanted to avoid a classical which involved a vertical incision. It had more long-term consequences and felt like another loss on top of what we were about to lose.

An hour or so later, it was time. They came in to take me to have a c-section. The guy who wheels patients around came in and asked me if I was “excited”. I started wailing and crying, he didn't understand what was wrong with me – no one had given him any context.    

It felt like they tried to get me out of that ward as quickly as possible as I was obviously disturbing the other women. Pete was there holding my hand as we went up. They explained where he could be and where he'd have to go. He could be with me until I entered the operating theatre, but after that would need to go and wait in the delivery room, and they would bring the baby there.

Another last-minute blood test determined my platelets and clotting abilities had continued to drop as well, and they were concerned I would have a spinal bleed if they performed an epidural or spinal pain relief. So, I was to be put under a general anesthetic. At the time, this made it feel less scary, but in hindsight, I would have given anything to have been awake and have a few moments with Millie before she passed.

In the little room before the OT they messed up yet another cannula by flushing one forcefully and painfully. This was done by the more junior of anaesthetists and noticed by the more senior one. He promised me he'd sort a better one for me when I was under, and I wouldn't feel it. It seemed like a small mercy at the time. Then all the doctors came in – Pete was still there, thankfully     .

Horribly and painfully, they questioned me again about whether I was sure about the resuscitation, I was just sad and exhausted by this stage. To have made the decision and at this late stage to be asked all over again by a host of new people was awful. I didn't know or understand why they were asking. I guess everyone wants to hear it straight from me. 

Then I was under, and then I was awake. 

I woke up in a room in the maternity ward, a sea of beige walls. But much bigger than the rooms I had been in previously. I'm sure more things occured but I don't remember them.

The next thing I remember is Pete talking to me, again, I don't remember exactly what about, maybe asking how I was feeling. I couldn't move and felt like I had a weight on my abdomen. Pete asked if I wanted to meet or hold her, I said yes because I didn't know what else to say.

Someone put this tiny baby in my arms. She was so incredibly small and so dark, she had no rosiness or life about her, she looked like me and had these beautiful little hands and feet.

They had dressed her in a little dress and beanie, probably mercy, so I didn't have to see her little skinny body in full view. I didn't know how to feel or what to do.

I cried, I cried so hard I think I ripped stitches. My poor doctor came in to see me, having found out what had gone on when he came in that morning. He didn't have words, just said he'd come back. I was a bleeding, crying, painful mess. I don't think I've ever felt pain like that before or ever will again.

Holding your dead child in your arms is horrific, yet it would have been more horrific to never be able to hold her.  

I come back to this memory a lot. It's horrible, but I also hold onto it and never want to forget it.

This is the moment I met my Millie, I'll never get another chance. Holding her beautiful little feet in my hands, so much more a baby than I expected. So beautiful even at this stage, and so recognisably me. That is all I have, so I hold onto it.

I felt sick, so I asked them to take her, and they gave me something to put under my tongue to help with nausea. It didn't help, and I proceeded to vomit whatever was left in my stomach, but not much. According to the medical reports 6 hours after the operation they transferred me to ICU due to the continued bleeding.

There was a lot of reassurance that Millie would be taken down with us in what they call a Cold Cot. It was kept cold through an electronic cooling system to preserve her body while she stayed with us. They found us an ICU room, and I think I slept most of the day. I asked my sister to come to visit me and bring me a hairbrush (no idea why a hairbrush, but considering the circumstances, it wasn’t important why).

She was the only person to visit us that day. She came, brushed my hair and listened to what happened. She comforted me and met Millie, saying that she looked like me. I needed her there so much and for her to see my baby too. She stayed strong and didn't get upset, but her husband told me later that she went home and cried afterwards.

I remember I attempted some food as it had been more than a day since I had eaten. The bleeding at the c-section site was still happening, but I guess we weren't overly concerned. I don't remember if they did a transfusion or what. Pete isn't sure either, but it's possible.

At one stage, I woke feeling like I had wet the bed. I had bled through the dressings all onto the bed. Pete was sleeping on a fold-out armchair on the floor and snoring, utterly exhausted from the last 48 hours. I remember being annoyed at him because I couldn't get his attention. I was yelling out to him, but nothing, even though I know now that it was entirely not his fault. I ended up pressing the nurse call button instead.

Lucky for me a nurse and some of the night obstetricians came, I think even maybe the one who saw me the night before. They decided, instead of just re-dressing, to look at the wound. Pete had woken up by now, and I was telling him not to look as it made me feel sick. Again they removed a massive glug of solidified blood between me and the dressing.

On the incision, they found a small opening still bleeding through. They got out a needle and popped a few more stitches on. That's when it stopped bleeding. I have a star-shaped scar. Who knows how much I was bleeding through that opening, but everything improved after they closed it.   

Some nurses took care of me in this experience like angels sent from heaven. The nurse who visited me that morning was one of them. After they did the new stitches, they changed my sheets, and she promised me she'd be back early in the morning and do a bath before the change over to the next nurse.   Sure enough, before breakfast, she probably came somewhere around 5 am and gave me a sponge bath. I was so thankful. It had been three days since my last shower. I was covered in blood, sweat, vomit, operating theatre smells and antiseptics.

It was small mercies like this that made the situation less unbearable.

That morning there were problems with the cold crib, it wasn't staying cool. I could tell they were trying hard to fix it without telling me there was a problem, but it was starting to smell a bit too. It was up to Pete and me when they would take Millie away. I felt awkward and unsure what to do.

I didn't want her to go, but I didn't know what to do with her either. In hindsight, I wished I had prepared myself for her death more than I did. I wish I'd known it was okay to take photos of her and with her. I wish I had held her for longer and memorised her little face, but I didn't, maybe because I didn't want to think that would happen. 

My Mom and Dad were coming to visit in the late morning, and they had lost a baby before she had reached one year old, and I knew this would be dredging up horrible memories for them. I decided that Millie needed to go before they arrived because it would be too confronting for them. Isn't that silly?

What a silly thing to think I needed to do such a thing for someone else at the time. That was the decision I made, so I held her for the last time for a few minutes, had Pete put her back in and then let them know they could come to take her away.

When Mom and Dad came to visit, I was still in the NICU. I don't know what I looked like, but I imagine I was pale, sick looking, with drips attached. Mom and Dad stood. They seemed little and scared, looking at me from the end of my bed. I think I relayed to them part of what had happened.

I can't remember if they hugged or kissed me. They possibly did one or the other. I remember Dad looking at me standing at the end of the bed. He looked gutted, broken.

I'd never seen that look on my Dad's face before, and I'm not sure I have seen it since, either. It was so sad. I imagined it was him remembering losing his firstborn,  Jennifer, and maybe how mom looked years and years ago. I think mom brushed my hair or something, it seemed to be a family thing, and then they left.

By midday, I think they deemed me well enough to return to the maternity ward. It's horrible that they put women who lose their babies back into the maternity ward. Every baby cry cuts a new hole in you, and your own cries and misery haunt the happy halls of newborns. Mixed in with happy, excited new parents are those feeling gut-wrenching pain of loss.  

Having had a c-section a second time, I now know my recovery was far from ordinary. I was so weak and in a lot of pain. On that second day, they offered to try and get me up and have a shower as it would make me feel better. They weren't pushing it, though, which I imagine they would have for mums who had routine c-sections and births. I remember I tried to sit up and off the side of the bed, and I felt so dizzy and unwell that the nurse and I both decided it just wasn't going to happen and we'd try the next day again. 

I think I was in the hospital for about five nights afterwards. They were trying to make sure my blood pressure didn't spike, and nothing else happened.

Mom and Dad visited one of the days, and they got me a wheelchair so we could go outside the hospital. It was silly and poorly timed, and we shouldn't have done it, but I thought it would be a good idea at the time. They arrived, and we headed out, up the road a couple of blocks to a café. It was challenging to get me in, which was a hassle with my parents, who were awkward on a good day when they weren't pushing around their daughter, who had just lost a child.

Anyway in classic me style, I felt more awkward for them and tried to make the experience okay for them instead of for myself. 

There was a baby on the table next to us. A beautiful, cute baby, which these days wouldn't bother me at all, but it was a bit much then. I felt so awkward being there, like I had no right even to be in the presence of a baby anymore.

Pete was pushing me around but busy being Pete chatting to my parents and being personable, and he accidentally bumped me around in the chair a bit which hurt. I am sure Pete asked me several times if I was okay seeing what I was staring at or trying to avoid staring at. By the time we left, my painkillers had worn off, and I was really feeling it.

I ended up feeling angry and asking to be taken back to the hospital. It was my first of many experiences feeling awkward, guilty and sad around babies or pregnant women. In fact, you'll find after an experience like this, you'll think everyone's pregnant in a way you never noticed before. 

But our journey didn't end here. I received support and counselling from Red Nose. The team supported me right up until the birth of my second child. Without Red Nose's support I'm not sure we would have been able to navigate a second pregnancy. Please support Red Nose this Red Nose Day to ensure families like mine, always have the 24/7 support they need.

I am sharing my story because I felt so alone and alienated during those days and weeks after Millie's passing, and still do to some degree today, years later. If sharing this helps anyone feel slightly less alone then I've done some good.    

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