A Message For My Pregnant hEDS Patients

I started my career as a prenatal genetic counselor because I love babies, pregnancy, and childbirth, and I love being part of that process for people. These days I see mostly hEDS patients in my private practice, and far too often they come to me with the same concern: fear and guilt about wanting to have a baby. This is largely because of a scarcity of information on hEDS, pregnancy, and childbirth.

There are very few OBGYNs, let alone MFMs (maternal-fetal medicine specialists), with expertise in hEDS. I've had patients tell me they were turned away by MFM practices because of their hEDS diagnosis with doctors citing it as too dangerous. This is a clear case of misinformation (see my prior blog post about retiring the term “EDS”). Unfortunately, many physicians do not understand the nuanced diagnoses that fall under the “EDS” umbrella, leading to hEDS being lumped into the same high-risk category as vascular EDS (vEDS). While hEDS may require MFM supervision, the catastrophic risks associated with vEDS are simply not typical for hEDS.

So with that in mind, this is a blog post for patients with hEDS who are pregnant or planning pregnancy.

Because formal society guidelines don't yet exist for hEDS in pregnancy, the best available guidance comes from expert consensus, review articles, and observational studies. Smaller studies focusing exclusively on hEDS patients often find outcomes close to those of the general population. However, larger database studies indicate that certain complications, such as preterm birth, cesarean delivery, and postpartum bleeding, are roughly 1.3 to 2.5 times more common in pregnant individuals with hEDS. Fortunately, truly catastrophic outcomes are rare.

To answer the question: is it safe for me to have a child? The answer is a resounding YES. People with hEDS give birth every day. Armed with the right information, an advocate on your side, and proper planning, outcomes are very positive.

Before Pregnancy

• Plan your team: find an OB or MFM who has experience managing complex patients. Extra points if they know hEDS or POTS, but given how few of those providers exist, someone curious and willing to learn goes a long way.

• Find a doula familiar with hypermobility/hEDS. Having an advocate on your side who actually gets YOU and your condition can make a huge difference.

• Consider a baseline echo, a one-time check of your aortic root. It's low-risk and reassuring to have. Some more recent data suggest aortic enlargement in hEDS tends to be mild and may be no more common than in the general population. 

• Find a pelvic floor therapist. People with hEDS are much more likely to have pelvic floor issues (incontinence, prolapse, pain), and pregnancy can make them considerably worse. A pelvic floor therapist is essential support before, during, and after pregnancy.

During Pregnancy

• Pregnancy hormones naturally loosen connective tissue to prepare the pelvis for delivery. As a result, patients with hEDS are at increased risk for subluxations, dislocations, and pain, and existing instability can get worse. Talk to your pelvic floor and physical therapist early. Supportive belts, side sleeping with pillows, and movements that keep your pelvis aligned all help.

• For those with POTS, pre-pregnancy rules apply. Drink, drink, drink! Stay hydrated, increase your salt intake (talk with your doctor first), wear maternity compression garments, and skip exercises where you're flat on your back. Review any medications you’re on with your doctor. 

• For those with MCAS, the research is genuinely thin. The best advice right now: make sure any medications you're taking: antihistamines, cromolyn, whatever it is, are cleared as safe to continue in pregnancy.

• Digestive symptoms are common in hEDS and pregnancy can make them more noticeable. Managing these symptoms is similar to any pregnancy: small, frequent meals, proper hydration, adjusting fiber, and simple measures like raising the head of the bed for reflux. If nausea, poor intake, or weight loss becomes significant, its important to address this with your care team early.

• Nutritional deficiencies show up more often in people with hEDS, particularly for those who also have significant GI issues or POTS. Consider askingyour care team whether any bloodwork or screening makes sense for you before or during pregnancy, so anything that needs attention can be caught and addressed safely.

• Write up your birth plan (I know, I know, wishful thinking, but it helps to think through what you want, even knowing things don't always go to plan). Mention any history of poor anesthesia response, and consider requesting a side-lying position for exams and delivery. Let the urge to push build naturally; it gives your tissue more time to stretch.

• Cervical insufficiency is more common with hEDS. Ask your team about a cervical length check at your second trimester anatomy scan. It's a simple measurement that helps flag whether you need closer monitoring given small increased risks for preterm birth.

• Book an anesthesia consult before delivery, usually done in the third trimester. Many people with hEDS get less relief, or shorter-lasting relief, from local anesthetics. Epidurals and spinal anesthesia are considered safe and effective for hEDS, so having a plan in place will help you feel prepared and confident going in.

Labor and Delivery

• Labor can move much faster than expected with hEDS. Patients often describe a slow early phase that suddenly flips into fast, intense, active labor.

• Both vaginal and cesarean delivery are safe for people with hEDS. Wound healing can be slower with C-section and scars can sometimes form abnormally. If you need a C-section, a simple question like "Given my hEDS and how my tissue heals, how do you plan to close and support my incision?" opens the door for your surgeon to take your tissue fragility into account.

• Hospital birth is recommended for individuals with hEDS, mainly because labor can move fast and bleeding risk runs higher.  Ask your OB or MFM directly: "Given my hEDS, do we have a plan in place for heavier bleeding during and after delivery?" Having that plan ready before labor is far better than sorting it out in the moment.

• Let your doula, partner, or other support person advocate for you. This is an intense experience, and having people in your corner lets you focus on the here and now.

Postpartum

• The postpartum period tends to last longer with hEDS. Give yourself time. Tissue heals more slowly. Postpartum bleeding is more common too, so voice any concerns early to your care team.

• A tidy 6-week postpartum course is much less likely for those with hEDS. Line up help. Family, a postpartum doula, extended maternity leave, extended partner leave, whatever you can get, use it, and don't be shy about asking.

• Remember your pelvic floor therapist? Keep going. This is a critical window for your pelvic floor to heal, and that guidance pays off long term.

• If you didn't set this up before delivery and you're feeling blue, anxious, or just not like yourself, reach out for mental health support. It's common, it's treatable, and needing it is not a sign you're not coping.

• Newborns of hEDS parents can bruise more easily or have a joint slip slightly with the normal handling of birth. If there is early or easy bruising, ask that it be clearly documented in the medical record. Having it noted from the start protects you and your baby.

There isn't a ton of research on hEDS and pregnancy yet, and some of the most reassuring numbers come from smaller studies. However, the picture is genuinely encouraging despite somewhat limited evidence. Don't let fear talk you out of building the family you want.  And if you ever feel unsure about the guidance available, it's okay to ask questions, seek a second opinion, or find a provider who takes the time to understand your specific diagnosis.

This post is educational, not medical advice. Every case of hEDS is different. Talk to your physicians before making decisions about your pregnancy.

Learn more or get evaluated

New to this? Start with the guide to the types of Ehlers-Danlos syndromes or check out this blog post on hEDS vs HSD.

If you are wondering whether hEDS or HSD could explain your symptoms, book an evaluation here.

References

Blagowidow, Nataliya. "Obstetrics and Gynecology in Ehlers-Danlos Syndrome: A Brief Review and Update." American Journal of Medical Genetics Part C, 2021.

Forghani, Irman, et al. "Hypermobile Ehlers-Danlos Syndrome: Diagnostic Challenges and the Role of Genetic Testing." Genes, 2025.

Haem, Thibaut, et al. "Vascular Ehlers-Danlos Syndrome and Pregnancy: A Systematic Review." BJOG, 2024.

Kciuk, Olga, et al. "Pelvic Floor Symptoms in Cisgender Women With Ehlers-Danlos Syndrome: An International Survey Study." International Urogynecology Journal, 2023.

Pezaro, Sally, et al. "Management of Childbearing with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders: A Scoping Review and Expert Co-creation of Evidence-Based Clinical Guidelines." PLOS ONE, vol. 19, no. 5, 2024, e0302401.

Spiegel, Erez, et al. "Pregnancy Outcomes in Women With Ehlers-Danlos Syndrome." Journal of Maternal-Fetal & Neonatal Medicine, 2022.

Tinkle, Brad, et al. "Hypermobile Ehlers-Danlos Syndrome (a.k.a. Ehlers-Danlos Syndrome Type III and Ehlers-Danlos Syndrome Hypermobility Type): Clinical Description and Natural History." American Journal of Medical Genetics Part C, 2017.

Wright, Georgia L., et al. "Delivery Outcomes and Postpartum Readmissions Associated With Ehlers-Danlos Syndrome." American Journal of Perinatology, 2024.