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: 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.