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.  

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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!

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