Pregnancy and Ehlers-Danlos Syndrome: A Rollercoaster Without the Seatbelt

Let’s be honest—talking about pregnancy when you have Ehlers-Danlos Syndrome (EDS) is like reading the safety manual while already plummeting downhill on the rollercoaster. It’s a topic laced with hope, spreadsheets, and a touch of existential panic. And inevitably, someone will chime in with, “But my friend has hypermobility and she had twins on a trampoline!” Thank you, Karen. Genuinely enlightening.

For my partner Sam and me, this topic is more than academic. We tried to start a family—but it wasn’t in the cards. EDS was one factor, though not the only one. There’s a grief to that: quiet, complex, and lingering. It flares when we hear baby announcements, when we stroll past the children’s section in a bookshop, or in those fleeting daydreams of what might have been. But there’s also peace. A hard-won, sometimes-wobbly peace.

We’ve built a life filled with love, dog hair, mild chaos, and more medical terms than a trainee doctor’s revision notes. And while we didn’t get the chapter titled Parenthood, we still believe in sharing what we’ve learned—for those who are trying, wondering, grieving, or simply researching what could lie ahead.

This isn’t just a clinical guide. It’s a clear-eyed, compassionate deep dive into the realities of pregnancy with EDS—what’s possible, what’s complicated, and what we really need to talk about more openly.

So whether you're planning, pondering, or pivoting, I hope this piece finds you with empathy, honesty, and one key truth: whatever you choose, this is your story.

The Genetic Dice Roll: Can You Pass On EDS?

Short answer: yes. EDS is a genetic condition—but the how depends on the type.

1. Hypermobile EDS (hEDS)

   • Believed to be autosomal dominant, meaning there's a 50% chance of passing it on to each child.

   • The twist? We haven’t found the gene yet, so there’s no prenatal screening—just a clinical diagnosis and a well-worn family history chart.

   • Severity can vary dramatically, even between parent and child.

2. Classical EDS (cEDS)

   • Also autosomal dominant, with a 50% inheritance risk.

   • Genetic testing is available. Source: Ehlers-Danlos Society.

3. Vascular EDS (vEDS)

   • Autosomal dominant and significantly more serious.

   • Risks include arterial and organ rupture.

   • Inheritance risk remains 50%, and genetic counselling before conception is strongly advised. Source: Mayo Clinic.

4. Recessive Types (like kyphoscoliotic or dermatosparaxis)

   • Rare.

   • Both parents must be carriers for a 25% chance of inheritance per pregnancy.

     
     

Birth Stories and Breech Entrances

Now, let’s get personal.

I didn’t just inherit EDS—I crash-landed into the world in a way that really should’ve tipped someone off. My mum endured 27 hours of labour (saint), and I arrived backside first. Not figuratively. Literally. The medical term was “breech,” but let’s be honest—it was a full-blown Cirque du Soleil entrance.

To properly illustrate: I was born folded in half, toes tucked behind ears. I left little heel-prints on my shoulders. When the midwives tried to put a nappy on me, my leg pinged back up into the folded position like I was auditioning for a baby yoga DVD titled Extreme Flexibility: Womb Edition.

Doctors told my parents—casually, in that vaguely ominous way doctors do—that I’d probably have issues with my hips later in life. Spoiler alert: they were right.

I’ve often joked that 27 hours of labour plus my dramatic entrance was enough to sour our mother-daughter dynamic from day one. Not that I carry a chip on my shoulder—more of a geological formation. Think Rock of Gibraltar, but with more joint instability.

But here’s the thing: this isn’t just funny dinner party material. It’s a reminder that the signs were always there. EDS—especially hypermobile EDS—was often overlooked, misunderstood, or dismissed for years. That’s why these conversations matter. Because no one should have to excavate their diagnosis from the annals of their baby photos.

Fertility and EDS: What the Research Says

If you're weighing up parenthood with EDS, you deserve the facts—not fear, but honest data and real-life context.

• Around 43% of people with EDS report fertility complications.

• There's an increased risk of miscarriage, premature birth, and postpartum complications, particularly with certain subtypes.

• A 2022 review noted connective tissue fragility may impact everything from cervical competence to uterine function.

It’s not about doom and gloom. It’s about walking into this with open eyes, a solid plan, and ideally a medical team that actually listens to you.

You Are Not a Risk—You Are a Person

Whatever road you’re on—trying, grieving, parenting, or just pondering—it’s yours. There is no single right way through this.

Some people with EDS have successful pregnancies. Others, like Sam and me, take a different path. One isn’t braver than the other. One isn’t more meaningful.

What matters is that you’re treated not as a risk factor, but as a person—with choices, nuance, and the right to informed, compassionate care.

Find the team that sees you. Build the plan that supports your body. And please, make room for your fears, your hope, your joy, and your grief. This is tender terrain, and you deserve the space to navigate it all.

Sam and I didn’t get the ending we once imagined. But we got love, laughter, loyalty, and a dog who wakes me up when I stop breathing in my sleep. That’s not nothing. That’s a legacy.

And if you’re in the thick of this—if you’re staring down consultations and spreadsheets and “what ifs”—I want you to hear this: you are not alone. Your experience is valid. And there are others who’ve walked this strange, beautiful, and often unpredictable path before you.

Where to Find Support and Information

Genetic Counseling & Medical Support

• Clinical Genetics Service - NHS

• British Society for Genetic Medicine

• Mayo Clinic - Ehlers-Danlos Syndrome Overview

EDS-Specific Resources

• The Ehlers-Danlos Society: Resources, global support networks, and current research.

• Hypermobility Syndromes Association (UK): Focused on support, advocacy, and education.

• RareConnect EDS Community: For international support and shared experiences.

Pregnancy, Fertility & Chronic Illness

• Tommy’s (UK): Pregnancy advice, miscarriage support, and research-based information.

• Wellbeing of Women: Research and support for women’s reproductive health.

• British Pregnancy Advisory Service (BPAS): Advice on pregnancy choices and reproductive healthcare.

Mental Health and Grief Support

• Mind UK: Mental health resources and helplines.

• Cruse Bereavement Support: For those grieving loss—including the grief of futures imagined but never realised.

• Fertility Network UK: Support and community for people facing fertility challenges.

  
  

A Final Word (With Love and a Smirk)

So take this article not as a rulebook, but as a map.

A compassionate, occasionally sarcastic, very real map—hand-scrawled with reminders like “Pack snacks for long appointments,” “Your pain is real,” and “Do not, under any circumstances, let Karen tell you about the trampoline again.”

You are not broken. You are not lesser. You are navigating something incredibly complex, and you’re doing it with more grace than most people will ever understand.

Whatever path you walk—parenthood, partnership, chosen family, or simply peace in your own skin—I see you. Sam sees you. And if you ever need a reminder that you’re not alone, you’ve now got this article, a stack of links, and one slightly sassy author cheering you on from the sidelines with a hot water bottle and a dog snoring at her feet.

You’ve got this.