May is Ehlers-Danlos-Syndrom (EDS) Awareness Month, a month to shine the spotlight on a frequently under-diagnosed multi-systemic condition of the connective tissue. May also happens to be around the time when we found out that I was expecting. EDS is a rare condition and sharing personal stories matters, so rather than just sharing a bit about my life with EDS, I thought I’d focus on EDS x pregnancy, birth and life with a newborn.
After many (frustrating) years of prodding, testing and experimenting, I was diagnosed with Joint Hypermobility Syndrome (JHS) in January 2015 and “upgraded” to EDS in April that year. I was as ecstatic as I was confused: Yay, a diagnosis! Eeek, but what do I do?
My journey to
recovery managing a chronic condition
I was initially referred to the Hypermobility Unit at University College London Hospital, where I was offered physio- and hydrotherapy, expert advice on self-care, pain management and specialist services, like podiatry and occupational therapy. Additionally, I sought advice privately from specialists at Hospital of St John and St Elizabeth, where my diagnosis was expanded from Joint Hypermobility Syndrome to:
- Ehlers Danlos Syndrome – Type III/Joint hypermobility syndrome. My Beighton score is 7/9 with flexibility at the little fingers, thumbs, knees and spine. I am also hyper-flexible at the neck, shoulder and hips
- Incomplete Marfanoid phenotype
- Chronic pain and fatigue
- Irritable bowel
- Easy bruising, skin hyper-extensibility
- And some other fun stuff, e.g. anxiety, local anaesthesia doesn’t work (more on that later)
Oof. So… um… could anyone develop a programme for me to treat all or even any of the above? ‘Course not.
So I went to work:
- With the help of a personal trainer/osteopath, I gained (some) strength and control of my body. There are no two ways about it. No pain killer, no acupuncture, no joint manipulation, no nothing helps me as much as regular exercise. Best reason ever to keep fit.
- Where my body hasn’t been strong enough yet or experiences injury or a flare-up, I use braces to support, e.g. we painted the hallway, which sprained my wrists (yup, from holding a paint brush). I purchased wrist braces, which I’d put on before any strenuous task. Same for my lumbar area and knee.
- A couple of sessions with a fantastic psychiatrist got my mind set on drug-free pain management. I’m petrified of upping my tolerance to pain relief to a point of no return, so I dug deep into CBT techniques to help me cope.
- I completely changed my diet and have been following the Low FODMAP diet ever since. Strictly speaking, Low FODMAP isn’t designed as a diet for life. You follow the elimination phase for a few weeks before reintroducing food groups into your diet. Due to the hypersensitivity of my gastrointestinal system, reintroductions have so far been unsuccessful. I’m sharing some of my favourite recipes right here on this blog.
- But most importantly, I’ve learned to take care of myself and go slow. I need to re-learn this again and again, but – hey! – you gotta start somewhere.
A blue line
And then I became pregnant. As happy as this faint blue line made me, both the pregnancy and the birth would be a serious challenge for my body and mind… and I had no idea where to start. I had just (kinda) figured out a normal life with EDS, what would it’d be like with a human being growing inside of me? Initially, the preggo hormones alleviated the niggly chronic joint pain – it was bliss!
But the more weight I gained (and I gained North of 25kg), the more relaxin was released to an already loose-jointed body, the more debilitating the pelvic girdle became, the more I suffered and – eventually – became virtually house-bound. My pregnancy was classed as high-risk, thus led by the care of consultants. What a grave mistake! By the time, the third trimester came around, I was virtually paralysed by anxiety as every consultant visit ended in more questions than answers. In fact, the care was so poor that they even missed doing the basics, e.g. measure the bump, and I had to schedule a last minute growth scan to make sure baby wasn’t going to take over.
Then there that was the birth: as little as is known about Ehlers-Danlos, try EDS x childbirth. If I had my way and disregarded the condition, I’d have chosen the Earth Mother way: no drugs, birthing pool, delivering my baby myself. But alas. The EDS was a thing, a very real. As much as the consultants tried to squeeze me and my ever expanding bump into a box, it turned out – quelle surprise! – that not only every pregnancy is different, every EDS body is different, too. So not only couldn’t they give me answers and a concrete plan of action, I ended up weighing up the statistics of EDS-related complications and risks and how much they might apply to the degree of my condition based on papers in medical journals.
- Preterm labour and membrane ruptures
- Postpartum haemorrhage
- Precipitous delivery
- Tearing of perineal skin
- Prolapse of bladder and uterus
- Pelvic instability
Sounds great, doesn’t it?
Due to being classed as high-risk, however, I also had the opportunity to speak to an anaesthetist, who a) knew his trade and b) understood that I’d be worried about the birth. He took my patient history (e.g. how have I responded to local and general anaesthesia in the past?), examined me (e.g. how flexible is the spine so as to administer the epidural), and worked out a birth plan with me with various options of escalation, e.g. interventions, epidurals, c-sections. The beginnings of a birth plan helped, but I felt so out of control that I sought it in an elective c-section. After all, every single person in the room would be briefed, the anaesthetist’s plan followed to the letter and baby wouldn’t be at risk. I was determined. This will happen.
And then we met the consultant midwife. Her aura oozed warmth and empathy and within minutes I was calm, centred and focused. She even gave me her private phone number… just in case. Back to Plan A: water birth, gas and air, just me, the baby and the Northerner.
My due date came and went. No preterm labour (just plenty of Braxton-Hicks for 7 weeks straight), no ruptured membrane. I gave birth to Baby Lemons 4 months ago in a birthing pool in 2.5 hours, aided by hypnobirthing techniques and gas and air alone. Read more about the pregnancy here [to come].
Life with EDS… oh, and a baby
Now that our bundle of joy drools among us (he cut teeth over Easter and the drooling hasn’t stopped), the real work has started:
- Unsurprisingly for a natural birth, my already special body showed some signs of trauma *stop reading if squeamish*: 2nd degree tear (local anaesthesia didn’t work but they tried anyway, triple stitches to make sure it sticks, stitches got inflamed), bladder prolapse, weak AF pelvic floor, 4cm diastasis recti. I’ve been working with a women’s health physiotherapist to slowly but steadily heal myself. Without any of those issues addressed, I’d do more harm than good going back to my typical exercise routine. Unfortunately, this means that before the ab separation is closed up and my bladder back where it belongs, my knee, back and hip have been suffering lots.
- I exclusively breastfeed, which means that both oestrogen and progestogen keep affecting the laxity of the joints. I’ve been using firm breastfeeding pillows (like this) to help support Baby Lemons’ weight. Thankfully, he’s a quick feeder, so we don’t sit around for too long.
- Baby Lemons is a chunk (7.6kg at 16 weeks) and he literally sprained my wrists. With thera bands (yellow) and mild stretches, I managed to go from excruciating pain to “ouch, ouch, ouch, *click* *stretch* I’m okay”.
- Sleep deprivation on top of chronic fatigue made me redefine the concept of ‘tired’. Can’t do much about it but accept it. This too shall pass, etc.
- Oh, and here’s the kicker: I was prescribed a mini-pill to prevent the next joyous pregnancy, which is a progestogen-only contraceptive, the worse thing possible for my joints. Read more here about “Hormones and Hypermobility”. After a couple of months on it, the bones in my body – especially feet, ankle, wrists and hands – felt like they weren’t attached to anything. I took the liberty to STOP IMMEDIATELY once it dawned on me. Just say ‘No’. Emphatically, with gentle jazz hands if need be.
If this doesn’t make for a delightful read, what does, eh? Look, pregnancy/childbirth/life with a newborn is rarely a walk in the park and pregnancy/childbirth/life with a newborn AND a chronic multi-systemic condition… well, it’s special. How many mothers would claim that they’d do the birth part again and again if it wasn’t for the pregnancy and postpartum? Here’s one.
There’s still lots to learn in this field and here’s to hoping that research bodies in the UK and around the world keep digging and finding ways to make life easier for all zebras and those about to become Mama Zebras specifically. I’m serious, we take “easier”. Anything will do, really… anything.
One of the online resources that helped me a lot is Ehlers-Danlos.org. Fun fact: the surgeon and midwife referred to the site when they couldn’t quite decide how to stitch me up. It’s that good. Check it out here.