Things I’ve Learnt As A Parent With EDS

May is here! The warmer weather has arrived, and summer is just around the corner, but May also happens to be EDS and HSD Awareness Month! As promised in my Instagram post at the beginning of the month, I plan to do a few blog posts around EDS Awareness month and how my EDS has affected me, especially as a new parent! I was hoping to have the first of these posts up sooner. However, both Alice and I have been ill, so it’s been somewhat challenging to write up the posts as Alice is extremely clingy when sick, and I’ve been rather tired, no thanks to my asthma! My uncle on my dad’s side also sadly passed away rather unexpectedly, so we’re also dealing with the aftermath of that.

Being a parent with any of the different Ehlers-Danlos Syndromes or HSD is something else! Although I’ll admit, I’m on the more extreme end of how my EDS affects me; my joints dislocate multiple times a day, and the chronic pain is at times unbearable. I also have stretchy and fragile skin, which Alice now has a thing for pinching and pulling – definitely not fun! With this in mind, my hand therapist has worked extremely hard to find splinting methods which work for me to at least protect my thumbs, wrists and hand joints from dislocation. As well as a variety of splints made by my therapist at the hospital, I also use the Aircast wrist splints with thumb spica when playing with Alice as I don’t like to wear my soft casts around her as they’re pretty scratchy on her skin! Unfortunately, my other joints are still dislocating on multiple occasions during the day, especially as Alice is now climbing over me, but I’m slowly working on managing them! 

Another thing I’ve come to realise is that EDS makes doing some tasks so much harder! For example, nappies? Once your little one is more active, forget it and get pull-ups! They’re much easier to get on and off as you can stand little one up to stop them wiggling around and rolling away from you. A little tip if you’re using Pampers like us, you can get free packs by scanning the codes inside the packs of nappies and nappy pants into the Pampers Club App! Another annoying task that’s harder is getting jars and lids off, so I suggest you get a jar and lid opener, or you’re asking for either a subluxation or dislocation of several joints! 

As well as needing different splints when playing and interacting with your little one, you may want to invest in a protective play mat such as the ones that Munchkin And Bear do. We got ours as it’s made of memory foam and protects Alice from bumps whilst giving me some more joint protection! The mat is also highly durable, and I can easily roll over it in my wheelchair. When it comes to cleaning the play mat, we use Clenill wipes at the beginning and end of each day, plus whenever there are little messes made! Another perk of these mats is that they’re double-sided, so you can change up your space’s design with the flip of the mat! 

Other things I’ve learned are more to do with being a wheelchair user and a parent. For example, I knew that feeding would be hard as I couldn’t get close enough to high chairs. Luckily, doing baby-led weaning with Alice has paid off big time! Not only does Alice adore food, but it’s also meant I haven’t had any high-chair fights! So instead, I use the Mamas And Papas snug seat on the dining table with the activity tray detached for mealtimes. As we all eat together and Alice is never left alone, it’s a pretty safe method for us, especially as I can get under the table with my wheelchair! 

Another thing is that trying to go anywhere with both a pushchair and a wheelchair is very difficult to do independently! But, thanks to a lot of practice, I can push Alice and myself on flat ground if my joints are having a good moment. However, uneven ground or bad joint moments are a no-go! This is also why I’m hoping to be able to either get an electric wheelchair or a power attachment soon so that I can do more things with Alice independently. This is especially important now as once I’ve got a car sorted, I’ll finally be driving again! However, the only reason I can do things with Alice outside of the house is because of the pushchair we brought, which I’ll be doing a whole blog post on. I’m aiming for that to be out later this week, so keep an eye out! 

Do you have EDS or HSD? What did you learn on your parenting journey? Comment below or on our TikTok video/Instagram reel which shows some of the products I’ve mentioned in this post!

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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 When Pregnant: 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.