Our Birth Story: Part Two – Labour/Birth

Following on from ‘Our Birth Story: Part One – Induction,’ we’re so excited to share part 2 of our story with you all! This blog post will take you through our labour and birth, what happened and why. Then in the next blog post, we’ll introduce our little one (for those who haven’t seen our little one on our Instagram already) and what happened next. 

For now, let’s take you through our labour and birth journey! 

0300 Friday 20th August 2021

At 0300, Sarah, who was looking after us, checked my progress and excitedly announced that I was 4cm dilated and officially in labour. Considering that my cervix was still very much closed at midnight, most of the team on the labour ward couldn’t believe the quick progress. Thankfully, my epidural, which was fitted the evening before, was working brilliantly at keeping the headaches at bay, with them only resurfacing around the 10-minute mark, which was when I could press the magic button for more pain relief. 

With dad being my second birth partner, he and Alex decided to go and get some fresh air to keep themselves awake whilst I tried to get as much rest as I could whilst my body was doing its thing. Since the headaches first really kicked off in the early hours of Thursday morning, I hadn’t been able to sleep much, so I needed to get as much shut-eye as possible. With the headache resurfacing every 10 minutes, however, that wasn’t easy. We also had a problem in that little one’s heart rate dropped with every contraction, thankfully recovering each time. Dad and Alex returned, and whilst Alex managed to stay awake, it was a different story for my dad, who fell asleep bless him! 

At 0500, Sarah rechecked me to see how dilated I now was, realising I was 9cm dilated! We now knew that it would be a fast labour and that the big moment was upon us! The doctors came in to recheck the CTG, and as our little one was still dropping heart rate with each contraction, they decided that I needed to be rechecked in an hour. I decided to continue getting as much rest as I could on Sarah’s advice, although the epidural was beginning to not work as well as it had, which made resting difficult. 

0600

Finally, the magic 10cm had been reached! From here on in, things went very quickly. Half dazed, all I remember was hearing the word theatre and panicking that the doctors would switch to c-section last minute. One of the doctors came to speak with us about the plan now and decided that a trial of forceps would be done in theatre so that the doctors could quickly switch to a c-section delivery if need be. We knew the birth itself would be difficult as I wouldn’t be able to push, but with little ones CTG still showing decelerations, letting my body do its thing was no longer an option; it had done all it could. Whilst I was disappointed that I couldn’t continue letting my body do its thing, I knew that our little one needed some help getting out and making it safely into the world. 

At 0615, I was wheeled down to theatre with Alex in tow while dad stayed in our room on the labour ward. The whole time I was praying that my hips wouldn’t dislocate so that it would only be forceps and not a switch to c-section, which had my hips dislocated would have ended up being the case. We arrived in theatre and was introduced to the theatre team before they completed the various checklists. Luckily, my consultant’s extremely detailed delivery plan included suggested positions to make sure my hips stayed aligned, meaning that they didn’t dislocate! Then, with a more potent anaesthetic popped into my epidural, it was time to get this baby out! 

All I could do to assist the team was focus on my breathing and try to use my top two abs to help push down (those are the last muscles I have voluntary control over). Paige, who was taking over from Sarah, arrived and together, they told me when to take a breath in and when to breathe out, timing my breathing with the contractions. Alex later told me that the doctor pulling our little one out with the forceps had to use all their strength, so I’m not sure how much my breathing helped! 

0710 and 6 contractions later, our baby’s head was born! After some delayed cord clamping, which was one of the main things I wanted along with skin to skin as soon as possible, we got to meet our little miracle and fighter at 0714! All in all, my total labour was 4 hours and 15 minutes – pretty quick, all things considered! 

In the next blog post, you can meet our little one and find out what happened after the birth, including why our little fighter had to spend some time in NICU and later on transitional care. 

Our Birth Story: Part One – Induction

Finally, the time has come for us to share our baby’s birth story! After our baby was born on 20th August 2021, we thought it would be nice to share our birth story and what happened. As it’s pretty lengthy, we’ve split it into two parts – induction up to labour in part one and labour/birth in part two. We hope that sharing our story will help those of you who are giving birth in similar circumstances.

Wednesday 18th August 2021

After nearly three weeks of being in hospital (bar home leave to sort out the last few bits between CTG monitorings), the day had finally arrived to induce labour and meet our little miracle. Although this date had been the planned date for the last four weeks of my pregnancy, getting there wasn’t guaranteed, especially after finding out about the fetal growth restriction and the low baseline heart rate that would often get picked up on overnight CTG monitorings. 

At 0830, the midwives who we’d gotten to know very well in the final few weeks came to transfer us over to the delivery suite. Unlike most people who have their inductions started on the antenatal ward, my consultant wanted me on delivery suite to keep a closer eye on me because of my risk factors. We were fortunate that because everything had been well planned out in the weeks leading up to induction day, we had the largest room in delivery suite, which is usually reserved for multiple births. It meant that I had room to move around in my wheelchair, even with all of our bits and pieces. 

A few minutes after arriving in our room, my consultant and the team on the delivery suite with her that day came to say hello, discuss the plan and see if we had any questions. After we discussed the plan and exchanged a few jokes about the size of my suitcase (a great mood lightener which helped put my nervousness at ease), we were left to get settled in. About an hour later, the midwife looking after me for the day came in to examine me and start the induction! 

As my cervix wasn’t entirely favourable, our induction was started with a Propess pessary which was left in for 24 hours. Alex and I spent the rest of Wednesday morning watching Netflix. Later in the day, dad arrived, so we decided to go outside and get some much-needed fresh air before they went home.

Thursday 19th August

At around 0330 on Thursday, the contractions I’d been having for weeks beforehand were finally strong enough to trigger my headaches. The problem with this, however, was that my blood pressure also became spiked. Thankfully paracetamol took the edge off a bit for a couple of hours until it stopped doing anything. 

Come 0900, the contractions were getting stronger but still not regular. The team looking after us for Thursday came to introduce themselves and discuss seeing if the Propess had done anything. At 1030 we had another monitoring done before the pessary was removed. Although it had softened my cervix, we still weren’t in a position for my waters to be broken, so it was time to try the gel! The gel went in around 1100, meaning we’d be checked at 1700 to check progress. 

By lunchtime, the headaches had really ramped up, and nothing was working. Alex had to help me transfer when I needed to catheterise as the pain was triggering my spasms and making transfers nearly impossible. Eventually, at around 1500, the team asked me if I wanted to try an epidural and set the wheels in motion to get it set up. Anaesthetics were called to discuss when to start it. As my waters hadn’t been broken, they were worried it may be in for too long if they were to do it at that point, so instead, they inserted a cannula to try and push IV paracetamol through in an attempt to take the edge off. Unfortunately, due to poor veins on my right side, it took the anaesthetist 3 tries to get the cannula sited. 

1700 soon came, and it was time to check my progress. Alex had gone home for a few hours around 1600 and joked that it looked like I’d peed myself; knowing that it would take a lot of retention for that to happen, I told him that was highly unlikely. Well, you can guess what it actually was that Alex saw – my waters! Somewhere between 1500 and 1700, they’d decided to go on their own. This was great news in that my epidural could be started. However, it also meant my IV antibiotics needed to be started as well. The team of midwives I’m under for my care were called, and Sarah arrived soon after. 

Sarah jumped into action when realising my antibiotics to cover us for the Group B Strep infection I was found to have hadn’t been started. It turned out that most of the team on the labour ward that day hadn’t realised I’m Group B Strep positive on top of all the other things they needed to know about me, so Sarah made sure they were brought up to speed. Around this time, the anaesthetics team came to put in the epidural, which thankfully went in without too much trouble, providing much-needed relief from the headaches. 

Alex arrived back just after the epidural was sited, and then it was time to get the oxytocin drip in that would make contractions more regular! The drip was started around 2130, and at this point, my cervix was still very much closed, so we knew it would be a slog – or so we thought! 

Fast forward to midnight and another check, we were still closed. But at 0300 on the 20th August 2021, the unexpected happened. We were 4cm dilated and officially in labour! 

Find out tomorrow in part two for what happened during labour and birth! 

Our Hospital Bag Must Haves: Aromatherapy, Alternative Therapies And Affirmations

With induction day looming (and potentially being brought forward after the last few days of yet more reduced movements), I’ve been preparing more for what I want to use during induction and labour to help me through. However, with multiple allergies meaning that most forms of pain relief are out of the question, I’ve ended up looking for alternatives to use which will help me through. Although I’m unable to feel from the top of my naval below, which means I won’t feel contractions and can only palpate them, I can get redirect headaches if there are any painful stimuli below my naval. Worse still, they can spike my blood pressure if it’s not controlled – something you don’t want happening in labour! 

So what am I planning to use? 

Various oils, pillow sprays, and roll-on's are laid out on a light grey sofa. The spray pillow sprays are contained in a purple organza bag and there is a rose gold and silver colour bracelet in the middle. Towards the bottom of the photo is a pack of 2 black anti-sickness bands.
Some of the aromatherapy items as well as sickness bands going in my hospital bag

Aromatherapy: I’m a massive fan of aromatherapy. Despite having brittle asthma on top of everything else, I often use aromatherapy to relax and calm myself. There are some essential oils that I cannot use as they set my asthma off big time, but others work really well. Products I adore using include Aveda’s Stress-Fix Composition Oil. This oil is so versatile that you can use it in the bath as a bath oil, on its own as a massage oil, or just warm up a few drops in your hands and breathe in to relax. Unfortunately, it has clary sage in meaning I haven’t been able to use it during pregnancy. However, it is safe to use in labour, meaning that Alex will be on massage duty! 

Another duo that I often use, especially when travelling, is the This Works Choose Sleep Bundle. This pillow spray and roll-on combination is a dream! The Deep Sleep Pillow Spray really helps to send you into a nap, whilst the Stress Check Roll-On contains a mix of essential oils to help you fully relax. I also recommend getting an additional pillow spray if you’re being induced, especially as some inductions can take a while, and you’ll want to get your sleep in whilst you can! 

I’m also putting in The White Company’s Relax Pulse Point in my case to work alongside the This Works Stress Check Roll-On. Although they do similar things, they have different essential oils. The pulse point contains the perfect mix of lavender, clary sage, and peppermint. This combination is said to be perfect for helping you relax whilst also speeding up labour, plus reducing sickness and headaches. 

As well as using aromatherapy blends like those above, I’m also taking pure lavender and peppermint oils to use in an aromatherapy bracelet. This bracelet has felt discs that you pop a few drops of oil on, then place in the disc holder on the bracelet. This is an excellent option if you find that putting oils directly on the skin irritates you, as the oil doesn’t come into direct contact with the skin. You can also use the oils in a diffuser. Some hospitals have diffusers on their labour wards or in the birth centre, so it’s worth asking your midwife about whether or not this is something they provide. Also, some hospitals require you to use their stock of oils, but you can choose which oils you want to use, so you may not be able to use your own oils with the diffuser if they do provide them.  

Other non-medical options: As well as my combination of aromatherapy products, I’m also taking sickness bands in with me, just in case. Even though I’m still on a powerful cocktail of anti-sickness medications to control my sickness, there are still some days I use the bands on my ankles as well as my wrists. 

I’ll also be using the relaxation techniques and breathing exercises that I learnt through watching The Positive Birth Company’s videos on YouTube. I also have some of their affirmation cards packed ready to go for during induction if I need a pick me up! They also have an affirmations function on Alexa, which I use at home each evening. However, if you download the Alexa app, you’ll be able to use them on your phone at the hospital as well! 

What About TENS or water?

Unfortunately, because of my condition, as much as I would love to try TENS in the early stages of labour, it’s contraindicated, so it wouldn’t be a good idea to try. I’m also not able to have a water birth as there’s no way to be able to hoist me out of the pool in an emergency. I am, however, hoping that we get one of the rooms that has an ensuite bath in so that Alex can help me get in and out of that in the early stages of labour. Of course, this is dependant on how much monitoring little one requires. Still, we’re hoping we won’t need to be on monitoring continuously. 

What if we have to go down the medical pain relief route?

As I said at the beginning, I’m allergic to most medical forms of pain relief. Outside of the hospital, the only painkiller I can take is paracetamol, so of course, that will be the first thing. I take paracetamol regularly to keep the edge off of my day to day pain levels, so, likely, I’ll just continue that regime through labour. Luckily, I’m able to tolerate fentanyl in small doses. There’s a fast-acting version that can be given if needed, but I’m hoping to avoid it. We also have the option of gas and air. I just have to be mindful of how much I take at once.   

What about an epidural?

Epidural is something that has been discussed at length with various people in the team looking after us. We’ve already decided that if we need it, we’re going to try it even though it’s technically challenging because of how my spine is. Another problem is that my body doesn’t always respond to local or regional anaesthetics, which caused my thumb fusion to be done under a general last year after a regional failure where I ended up screaming in pain. However, you never know if you don’t try, and I’m willing to try anything to get the birth I want! 

Did you use any alternative therapies or treatments during labour and birth? Share them in the comments for others to see!

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Our High Risk Pregnancy So Far: Why We’ve Accepted Induction Of Labour

The last few weeks have been stressful with no news and, as a result, no plan. Finally, at 36 weeks, we now have one, but it might not be the plan everyone was expecting us to have. If you haven’t read our previous post about our pregnancy journey so far, you can read the last one here

From the start, we always knew that I’d require some sort of medical input when it came to labour time and birth. Our biggest fears were that I’d be pressured into accepting a c-section which for me would mean a difficult recovery and relying on Alex and our families for almost everything for the first 8-12 weeks, both in terms of my care and little one’s. I’ve always been for a physiological birth, or as close to it as I can possibly get, only going for a c-section or other interventions if absolutely necessary, especially as it would very likely need to be done under general. Luckily, the result of the MDT meeting was that if I don’t want an elective c-section, then I don’t have to have one, but it’s under the condition that I’m aware we could still be heading down that route if either little one or I don’t cope well in during labour. 

How the option of induction came about and why we accepted

One of the biggest things about not going down the c-section route is unpredictability and the risks involved. For us, not only do I have a medical condition which means I can’t feel movements or contractions and have to palpate for them, but I’m also at risk of precipitous labour. Then, to top it off, we found out that I have Group B Strep at 26 weeks, and I’m also at risk of other complications. It meant that the idea of induction was proposed to us, with all the risks and benefits involved. Benefits? We’d have an idea of when my labour will begin, and with it, the option to ensure Alex is off work for a few days so that he doesn’t miss the birth. It also eliminates the risk of me giving birth at home with no help other than Alex’s Avmed training, which, whilst the scope of what Avmed covers is fantastic, where childbirth is concerned, it doesn’t equip you for a complicated labour birth. Cons? If it fails or something else happens, it’s a c-section since assisted delivery via forceps or ventose is out of the question due to dislocation risk. It also further increases my haemorrhage risk, something my consultant already factored in early on so that there’ll be medication drawn up and on standby if it’s needed. 

As my midwife talked to me about induction some weeks ago when Alex’s roster and being back at work was causing me stress around whether or not he’d even make the birth, Alex and I had actually spoken about the possibility of induction. We researched the risks and benefits before my consultant had even offered it to us to come to a decision together without feeling pressured. After those discussions with Alex and my midwife, I said that if induction was offered to me, I’d accept it to reduce the risk of that happening as him not being at the birth would be heartbreaking for us both. It also gives us some control over the situation as long as little one stays put and I don’t go into labour before induction day, something which could happen and my consultant warned us about when we accepted the offer. Alex had already made it clear that he’s scared of waking up during the night to find me still asleep whilst in advanced labour, something which we both know would affect him massively even with all of the training he’s equipped with, thanks to him being crew! 

As you can see, accepting an induction of labour was an easy decision for us once we’d weighed up all of the risks and benefits. Even with the risk of having to go down the c-section route if something goes wrong, the thought of having an unattended labour and birth with all of the dangers attached due to my complex medical history scares Alex and I more. We are also fortunate that we never felt pressured by the team looking after us to accept induction, mainly because we’d had that discussion ourselves beforehand, giving us time to fully consider everything. Not only is there information on induction of labour available to read in my handheld notes, but we also turned to Google to research the specific risks that are unique to our situation and spoke to other pregnant people who have EDS. But what if you’re enjoying a lower risk pregnancy and offered induction, or just don’t know if you want one?

Research is your best friend

Alex and I both know people who have been offered induction of labour and felt little pressure to accept, as well as plenty of people with low-risk pregnancies who felt forced into accepting an induction to keep their team happy. We started looking into our options quite early on once our consultant told me that she’d do everything possible to keep our options for labour and mode of delivery open. That kind of support from her when every other specialist outside of obstetrics had told me that c-section was the safest way forward meant the world to both of us. It also meant that we felt even more supported by the teams looking after us, both at our local hospital and the Silver Start Unit in Oxford, who we’re so thankful to have the specialist input of. 

Great places to research induction include Google (especially as you can tailor your search to your unique situation) and your handheld notes if your hospital provides information on induction of labour in these. I also highly recommend speaking to people who’ve had an induction of labour offered about their experiences, even if they didn’t accept the offer, as firsthand experiences can often help the decision making process. This same piece of advice goes for those who have medical conditions which could influence management. There are plenty of online groups on Facebook etc., which allow you to connect with others going through similar! If you can, start researching and discussing your thoughts with someone else early! This means by the time an offer of induction is given to you (if it is), you’ll have already thought about it and either decided on whether or not to accept, or you’ll have an idea of what questions to ask. It also means that whatever your decision is, you’ll be able to explain the reasoning behind your decision to whoever is looking after you knowing that you’ve given yourself time to consider all the risks and benefits. I’ve also learned to use one acronym that has helped us massively with each decision we make, called B.R.A.I.N. 

What is B.R.A.I.N?

B.R.A.I.N really is what it says it is; it’s using your brain to make an informed decision. 

B – Benefits (what are the benefits of this test or procedure for me and my baby?) 

R – Risks (what are the risks of this test or procedure for me and my baby?)

A – Alternatives (What, if any, are the alternatives?) 

I – Instinct (What is my instinct telling me? What do I think and feel about this test or procedure? Who else can I ask about it?)

N – Nothing (What could happen if I decide to do nothing or wait and see? Can this test or procedure be delayed? Can I take some time to think about it or research?)

B.R.A.I.N is something we’ve used throughout our pregnancy journey to make informed decisions and choices that we know are right for us without feeling pressured into doing something we may not necessarily want to do. It’s also something that we will continue to use and advocate that others use, especially as it is such a handy tool to have. With the NICE draft guidelines meaning that an increasing amount of people are already being offered induction at 39 weeks even if there isn’t a clear clinical need, now more than ever, birthing people and their partners must be able to make informed decisions without feeling pressured into accepting something they may not actually want. 

Have you been offered an induction of labour or had one in the past? Feel free to share your experiences in the comments with us! 

Accessibility In Maternity Care: A Disabled Parent-To-Be’s Point Of View

Being pregnant and disabled seems to throw near enough everyone. If it’s not people making assumptions and comments related to becoming a disabled parent (see our blog post on that here), it’s the lack of access to maternity care. Society can’t get to grips with the simple fact that disabled people have lives, have relationships, create families, and need the same access to services as able-bodied people!

Healthcare settings, in general, are not the most accessible places for disabled people. For example, wheelchair users requiring cervical or other screenings often can’t get onto the beds or close to the machines and sometimes can’t even get into the room they need to go in. In addition, sighted guidance training doesn’t always seem to have been provided to staff, and thanks to Covid-19, masks mean that those who rely on lip-reading are often left not knowing what’s going on. This is just the tip of the iceberg of access problems.

For me, in maternity specifically, the access issues have recently become a nightmare. Whilst the antenatal clinic is relatively accessible at my local hospital for wheelchair users, the same cannot be said for labour triage upstairs! Right from the beginning, my midwife has made as many of my appointments as possible with her home visits. Not just because of my vulnerability status regarding Covid-19, but because my home is set up for me. I can transfer out of my chair onto the sofa or the bed when it’s time to check little one’s positioning and listen to their heartbeat, and I also feel much more at ease because hospitals and I have a pretty bad history.

At my local hospital, labour triage has two assessment rooms. Both rooms are so small that as a wheelchair user, I’m unable to move around in either. It also means I can’t transfer onto the bed on a good day, can’t be hoisted in these rooms on a bad day, and to top it off, if I need monitoring, then it’s done with me sitting in my wheelchair, which can mean that the CTG doesn’t always meet criteria. If I need other examinations for whatever reason, the only option available is to wait for one of the larger delivery rooms to free up. The problems don’t stop there either, as in labour triage there’s no disabled toilet. It’s a case of me making sure I take a urine sample in with me when I go in, or I have to go downstairs to the disabled toilet to do one. It also means that if I need to catheterise whilst upstairs, we then have to go downstairs to do that. So far, in the few visits that I’ve had for various scares, I’ve found two delivery rooms that have toilets I can use as they have grab rails in, although on one of these I’ll still need help to transfer as the grab rails aren’t on both sides.

My access needs have become a bigger worry as the delivery day nears. Will I end up being a burden on already overstretched staff when I need help in the times Alex or other family coming to visit us aren’t there? I’ve already been made to feel like a burden once when a registrar didn’t understand my needs. If it wasn’t for the fact that my own midwife was with me when it happened, I probably would have broken down even more than I did. At 33 weeks, when we were worried I may have gone into preterm labour, I was seen in one of those tiny triage rooms. The registrar was adamant that they could help me onto a bed that both my midwife and I knew I wouldn’t be able to safely get on without being hoisted. In the end, my lovely midwife said to me, ‘I’m going to go and speak with the others to get you into one of the delivery rooms because there’s no way we’re risking a dislocation!’ Having that kind of advocacy during one of my most vulnerable moments has been invaluable.

The lack of access around the hospital is such a worry that I’m dreading the postnatal period whilst in hospital. Will there be enough room around the bed for my chair and my case, especially with little one’s cot to contend with as well. Will I be able to use the bathrooms and toilet on the postnatal ward? If I need to be hoisted, will there be room for that? Thankfully, I have such a great midwife that she’s already thinking ahead to that period, even to the point of planning to ask for me to have a side room which will mean more space. Anyone who’s given birth in a hospital knows that side rooms on postnatal are a rarity, so if we do manage to get one, I’ll be even happier. With my medication having a sedative effect, I know that it’s going to be a tough ask, but my access needs are just as important as other needs in the bigger picture.

Many won’t realise this, but July marks Disability Pride month. If you didn’t know that, it’s likely because you haven’t seen the equivalent of rainbow washing that companies perform during Pride month in June. You see, companies don’t seem to bother with disabled folk; I’ve seen hardly any talk about how they’re helping disabled people or making their services more accessible. Our communities’ struggles aren’t for one month of the year, they are every single day, and that’s why active allyship and advocacy for disabled people and their needs is so important! As I’ve said in this post, how my midwife advocates for my needs is invaluable. Not only to me but to Alex as well because he is also worried about my needs not being met if he’s not with me in hospital for whatever reason. After little one has arrived, I’ll be doing a post about how having almost one-to-one care throughout the pregnancy has really helped me and why I believe everyone should have access to that level of support if they need it!

Our High-Risk Pregnancy So Far: 32 Weeks And Still No Plan!

If there were a list of posts that we hoped we wouldn’t be doing, this is one of them! I knew from the start that pregnancy wouldn’t be easy. Alex and I spoke about that fact in detail quite a few times, as well as about what we would do in set situations, but we never thought we’d get to a point where we have no plan so soon to little one’s arrival! 

Going through a high-risk pregnancy takes its toll, and with ours, we have another problem; high levels of uncertainty. Uncertainty around labour because I can’t feel movements (more on that subject here), uncertainty and worries around neonatal withdrawal and how my medication has impacted little one, and finally, uncertainty over whether or not my body will cope with physiological birth. The latter could be true for anyone. After all, no one knows for sure if they’ll get the birth experience they dream of, but we quietly hope that everything will go to plan and for our preferences to be fully respected and carried out without question. 

For me, I’ve been adamant from the beginning that when it comes to mode of delivery, I want a physiological birth if at all possible. So when I attended my first appointments with obstetrics and my midwife, I made a point of telling healthcare professionals that I want to try, even with the uncertainty around my body being able to cope. Here’s the thing with my EDS; it’s unpredictable, especially as my dislocations can happen at any given moment. I also have autonomic dysfunction, spinal involvement, and on top of that, we don’t know for sure what type of EDS I have. Although I found out in 2015 that I have EDS, until 2019, everyone assumed it was the hypermobile type. But when my thumb joints failed to the point of needing fusion and other symptoms began popping up, there were concerns that I have classic EDS and not the hypermobile type. So when I fell pregnant again and got referred to Silver Star in Oxford, doctors there decided to get me tested and find out once and for all if it is indeed classic EDS. This very bit of information will be the difference between me getting my way and getting the chance to have a physiological birth or having to go down the c-section route. 

Up until 26 weeks, the obstetric teams I’m under all agreed to keep an open mind. However, a swab I had done when I started spotting again picked up Group B Strep. It’s not an issue during pregnancy, but it’s a problem in labour or if waters go since you need to be on antibiotics as soon as possible to reduce the risk of passing the infection onto baby. It’s yet another complication we could have done without, as it’s further heightened both mine and Alex’s anxiety around labour and birth. It’s also left me worrying that even if I can have a ‘normal’ delivery, physiological birth could out of the question if the team eventually recommend that I have an induction. 

Why The Idea Of A C-Section Scares Me 

Let me start by saying that you have to do what is best for you and your baby, and no two birth experiences will ever be the same. For birthing people who choose to go down the c-section route, I fully respect your decision and know that it isn’t always easy to make. 

For me, many of the worries around c-section delivery are linked to past medical trauma, which I’m still working on processing. My EDS means that both local and regional anaesthetics are ineffective to the point that I’ve had to be put under general for surgeries where most could be awake. In one surgery last year, I had a failed regional, and my last memory before being put under was screaming in pain as the anaesthetic failed to numb my arm. I also had problems coming around from the general afterwards, which wasn’t ideal. Luckily, we’ve been able to speak to the lead obstetric anaesthetist at the hospital in-depth about this and other issues, including my long list of allergies! During our conversation, the anaesthetist we spoke to joked, ‘you’re not an anaesthetist’s best friend, are you?’ ‘No, I’m not, I’m a paperwork nightmare’ was my light-hearted reply. That conversation also highlighted other issues. However, we also had our minds put at rest over certain things. 

One of the other worries about having a c-section under general is that we were both put under the impression Alex would not be allowed into theatre for the birth. Usually, this is the case and was so even before covid. But we’ve been reassured that depending on who is the team on the day, Alex’s emotional state (good thing he’s crew) and that there are no emergencies involving myself or little one, he may be allowed into theatre for the birth. It’s something Alex is super happy about, and I’m just relieved over even if it isn’t for certain. Having my birth partner with me means having someone I know and fully trust to fight my corner and ensure my birth preferences are respected. This is especially true where delayed cord clamping and skin-to-skin contact are concerned (both of which I want regardless of delivery method). 

There’s also the worries around my recovery from a c-section. People forget that it’s major surgery with a lengthy recovery period! In my case, it means not being able to transfer myself for 6-8 weeks which means I’ll probably need to be on hoist transfers – something I heavily detest! A c-section recovery would also mean heavily relying on Alex, my dad and others since I’ll likely have to restrict how much time I can be in my wheelchair and up and about. I also take longer to heal, thanks to my EDS, so there’s the risk that the usual restrictions could last even longer. All of this makes me worry about how much I’ll be able to be involved in our baby’s care in those first weeks.

32 Weeks and still no plan

When I had my genetic blood panel done to find out what we’re dealing with in terms of my EDS, I was informed that the results would be the most significant determinating factor regarding what mode of delivery would eventually be recommended. There was hope we’d have them back at around 28-30 weeks, enabling us to get a plan in place and know what to expect. We also need to have an MDT meeting, where all the specialists involved in both mine and little ones care meet to discuss the way forward. However, we can’t have the meeting until the genetics are back, something that is starting to worry not just Alex and I, but my consultant, who is now chasing them up. 

We’re hopeful that by 34 weeks, we’ll have the results, the meeting and know what will happen. However, I feel disheartened and stuck in limbo. My birth preferences still aren’t complete because I don’t feel I can fully finish that off until we know what is going on. As we get further along, the possibility of going into preterm labour without a clear plan is not only becoming more likely as the days go by, it’s becoming more and more worrying! However, the biggest thing for me is that whilst there’s no plan in place, I’m holding out hope I’ll get the physiological birth I’m hoping for, even if others think that option is fading away.  

Photo of a white pregnant persons midriff, with blue and pink elastic bands holding 2 grey discs to the stomach area with grey colour wires going off to the right of the photo.

Our High Risk Pregnancy So Far: Movement Worries!

Firstly, this would have been a post about how things have changed between weeks 20 to 25, but that one will have to wait for a bit as one particular matter kept overtaking the majority of the post whilst I was writing – movements! 

To help people understand why I feel the way I do, we first have to talk about both how and why we track little one’s movements is a little bit unconventional. My condition means that from the top of my belly button down, I have no sensation and can’t feel fetal movements. The fact is that so far, the only time I’ve been able to ‘feel’ was last week when little one took one good swipe at my ribs and dislocated two of them! Because of my condition, Alex was the first to feel little one’s movements, and it’s something I’m super jealous over as it’s usually the person who’s carrying that gets to feel movements for a few weeks before anyone else can! 

So instead of going about my day whilst tracking them, my life has revolved around putting my hands on my stomach (Alex often joins in at home to cover more ground) every 90 minutes for 10-15 minutes each time since the day Alex felt bumps first movement. So essentially, we’re palpating for little one’s activity and seeing what they’re up to in there! It’s something I knew we’d have to do, but nothing could have prepared me for how complex tracking movements via this method can be since it’s only giving us a snippet of their routine. So imagine the panic we go through each time we don’t get anything when we are palpating. 

Reduced movements

The one thing that is drummed into you when you’re pregnant is to track movements, that they are how you know your little one is well, and that episodes of reduced movements should be reported to your hospital. Of course, there are plenty of varying opinions on how much activity is normal, but only you know your little ones routine.

For most, spotting reduced movements is pretty easy but for us, only being able to feel movements by palpating them means that it’s challenging to decide when to pick up the phone. My first episode happened just shy of 24 weeks, so I phoned my midwife, who quickly decided a trip up to the hospital was needed. Since then, I’ve had four more episodes of reduced movement, three of those being in the last week. The difficulty in knowing when to phone about movements is made more challenging, especially as when I’ve asked about when Alex and I should be worrying, none of those I’ve asked has a concrete answer, and the difficulties in monitoring don’t end there. 

CTG Nightmares

Photo of a white pregnant persons midriff, with blue and pink elastic bands holding 2 grey discs to the stomach area with grey colour wires going off to the right of the photo.
All hooked up to the CTG monitor

Anyone who’s had a CTG or knows what one is will probably know that there are set criteria you have to meet for the monitor to return a normal result. Unfortunately, it can be tricky for a CTG to produce a normal result between 26 and 28 weeks, from what various doctors have told us. However, my condition makes it even more likely for monitorings not to meet the criteria.

Firstly, having to palpate for movements is difficult when the monitors are one your tum! But it’s the only way I can feel movement, and when I do, taking my hand off to press the button linked up to the machine often interferes with the monitoring to the point that we’ve had a loss of contact on some occasions. 

Secondly, my heart rate tends to run high – something that not only does the monitor not like, but it’s resulted in the monitor thinking that it’s picking up little one when it’s my heart rate that it’s picked up. It’s often picked up pretty quickly, but when little one shifts away, the monitoring ends up picking up my heart rate again, which means a lot of moving the monitoring plates around! 

Not meeting criteria always means having to see the doctors before we can go home, and visits during pregnancy have become so regular that I’m on first name terms with half of them, especially as there were many hospital trips at the height of my battle with hyperemesis gravidarum. The silver lining is that my history doesn’t need to be explained as they already know about me, but it gets to a point where it starts to run you down, and no amount of people telling you it’s ok to be worried can stop you from feeling like you’re becoming a nuisance. 

Feeling like a nuisance

Even if it shouldn’t, going back and forth to the hospital for the same thing gets me down. But, luckily, most of the staff are extremely understanding of the rather unique situation I’m in, even if it’s not something that they come across on a day-to-day basis which I feel lucky for because I know that’s not the same for everyone.

However, there’s been one time where I have felt dismayed by the response I received when I told one of the midwives how I have to palpate for movement. Not only were they confused on the phone, but they also continued to be either confused at or not able to accept the fact that because I have no sensation from the top of my belly button down, I’m unable to feel movements when I was at the hospital. It wasn’t until the doctors saw me that they changed their attitude and realised that I was serious about how my condition affects my ability to track little one. 

Thankfully, since that incident, I haven’t felt disbelieved, but it’s left me feeling like a nuisance even more than I would’ve felt. I even said to one midwife in day assessment that I’m hoping my consultant can organise a plan of action regarding movements. I know the almost daily hospital visits to be monitored if little one gets into a position that makes it impossible to palpate will wear me down further and cause more stress. After all, the ongoing problems with tracking movement almost constantly remind me that I’m in a very different situation to most pregnant people. 

Our High-Risk Pregnancy So Far

From the moment that positive test result shows, you imagine what the little miracle growing inside you will look like, what they’ll be like, their hobbies and interests, which parent they will be closest to etc. But what if you have a high-risk pregnancy?

Around 8% of all pregnancies are considered high risk. Most will have heard about gestational diabetes and pre-eclampsia. But some pre-existing medical conditions can get you placed in the high-risk category from the moment your GP or hospital are informed about your pregnancy! Luckily, I knew I’d be high-risk before I even got pregnant. However, for those who don’t expect to be told that they have risk factors at their booking appointment, the news can come as a huge shock.

So what should you expect if you have a high-risk pregnancy? 

I can only speak from my personal experience. However, you can almost certainly expect to be under consultant-led care. Exactly when you meet your consultant depends, but I met mine when I was 13 weeks pregnant. At your first appointment, they’ll discuss your risk factors with you, then make a plan regarding what you need from there. For me, things like starting Fragmin injections and high dose Folic Acid had already been actioned as soon as the local Early Pregnancy Unit confirmed viability at just over 5 weeks. But what I wasn’t quite expecting was to be told that I needed a referral to a different hospital this early on.

Referrals to a different hospital usually only happen if your hospital doesn’t have the specialists required. We had to be referred because I hadn’t had a maternal medicine consultation since 2017. Additional risk factors for referral included my medical and family history (we have a few congenital defects in our family). Luckily, it was to one of the best units in the UK, the Silver Star Unit at Oxford, and I can’t thank them enough for everything they’ve done so far. Not only have I now had a maternal medicine consultation with them, but we’re also under the genetics team for testing that needs to be done before I go into labour! Thanks to Covid, my Silver Star appointments have been virtual, but it’s meant that Alex has been able to be with me on the calls, as it’s something he likely wouldn’t have been able to attend if the appointments were face-to-face in Oxford due to flying schedules.

Thankfully, the lovely people at Silver Star have been advising our local hospital’s obstetrics team of everything that needs doing so that we don’t have to make the 120 mile round trip to Oxford. Luckily, the consultant at my local hospital had the majority of things recommended in place already: the anaesthetic referral due to local anaesthetics being completely ineffective, a GTT at 28 weeks, Fragmin injections and growth scans to keep a close eye on the little one. I’m also under a team at my local hospital who are experienced in dealing with high-risk pregnancies, meaning that I get the same midwife right up until I go into labour, and if not my midwife, then another midwife from that team will be with me during labour and delivery. The only thing that needed adding on top of the original plan was cervical length scans due to my pre-term labour risk.

As I get further into this pregnancy, one thing that will definitely be increasing is monitoring. Not just through growth scans, but no doubt regular checkups to listen to the little one. Unfortunately, due to one of my conditions, I’m not able to feel movement, so Alex and I have to palpate my tum for them instead. Interesting fact – Alex felt little one before me! We’ve already had one period recently of not feeling little one move for a while, which led to a triage visit, something that my midwife suspects will increase as this pregnancy progresses.

All in all, there aren’t too many changes appointment and monitoring wise with high-risk pregnancy until you get further along. Apart from my 13-week consultant appointment, 17-week growth scan, and two appointments with Silver Star, all my other appointments have been what you would expect in any pregnancy (booking appointment, 12-week scan, and 16-week appointment). The only difference I’ve had with my midwife appointments is that mine are face-to-face and done at home unless I need blood tests (most appointments are phone call due to covid), and my midwife attends all my scans with me as well as local hospital consultant appointments.

Want to know more about our high-risk pregnancy journey? We’ll be doing monthly posts about what appointments, scares and more we’ve had! If you have a question in the meantime, pop it in the comments below or send us a message on Instagram, and we’ll get back to you!