Estimated reading time: 8 minutes It is important to remember that whilst pregnancy can be challenging for some people with hEDS, many people have healthy pregnancies. If you have an hEDS diagnosis, it can help ensure you receive extra attention and individualized care.
Did you know an estimated that 1 in 20 births could be impacted by hEDS/HSD (1)? I didn’t know anything about EDS when I had my two sons – there were a couple of aspects that I now recognize as probably being related to EDS, like pelvic girdle pain and a very quick second delivery.
I was able to exercise throughout with pregnancy-adapted classes, swimming, and walking and had overall positive experiences.
Please remember, hEDS can be so variable and present differently with everyone, the same is true in pregnancy and childbirth. This quote from Sally Pezaro (midwife & PhD), et al. explains it well:
“Nevertheless, whilst much of the literature is focussed upon ‘risk’ it is important to remember that many childbearing with hEDS/HSD will experience an entirely low risk pregnancy and birth, whilst others may experience significant issues or anything in between.”
Let’s look at the research into hEDS/HSD and pregnancy.
Common issues in hypermobile pregnancies
For some people, symptoms associated with hypermobility can improve during pregnancy. For others, symptoms may get worse. The body goes through significant changes to expand for the growth of a baby and prepare for labor. Laxity of connective tissue can increase during pregnancy due to elevated levels of the hormone relaxin. This will have an effect throughout the whole body (2, 3).
Some commonly reported symptoms may include (2):
- Increases in joint laxity
- Pelvic pain – pelvic girdle pain, SI joint pain
- Varicose veins
- Fatigue
- Acid reflux
- Carpel tunnel
For those with POTS, symptoms can again be variable. A large percentage of people (60%) have an improvement in POTS symptoms while pregnant. Others have reported increases in symptoms, especially those that have more severe POTS (2). This can be supported by adding exercise, compression, salt, and oral hydration (2).
Identifying and managing pregnancy complications in EDS
According to researchers specializing in pregnancy and hEDS/HSD, the literature available on pregnancy doesn’t differentiate between the types of EDS, incorporating all types of that have different risk patterns, including vascular EDS. Vascular EDS is reported to have serious pregnancy complications (1).
In an effort to better understand potential pregnancy complications specific to hEDS/HSD, researchers surveyed people who have given birth. They compared the incidence of complications in the study group with published averages in the typical population. They reported complications that had a higher percentage in hEDS/HSD (n=1209 respondents with 1338 pregnancies) included (1):
- Hyperemesis Gravidarum (25.5%)
- This is severe nausea and vomiting that can lead to weight loss and dehydration. Authors note this may be associated with autonomic dysfunction such as POTS as there is an increased risk for hyperemesis in POTS.
- Antepartum hemorrhage (8.6%)
- Preterm rupture of membranes (7.03%)
- Pre-eclampsia (9.5%)
- Eclampsia (1.7%)
- Preterm birth (14.45%)
- Precipitate labor, less than 3 hours (34.4%)
- Born before arrival at the intended place of birth (1.9%)
- Shoulder dystocia (6.14%)
- Postpartum hemorrhage (20.6%)
- They note this may be related to MCAS, and MCAS treatment may be indicated though there is not enough research currently about MCAS and pregnancy
- Cesarean wound infection (24%)
- Postpartum psychosis (4.71%)
- Post Traumatic Stress Disorder (18.78%)
Please remember these complications do not happen for everyone, they are just more common in hEDS/HSD. Working with a care team that is aware of your hypermobility can help manage any potential complications and screen for risk factors related to potential complications (1).
They also state “It is important to note, however, that people with hEDS/HSD should not automatically be considered to have a high-risk pregnancy.” They link this to the wide degree of variation in hypermobility. There are also common reports of positive birth experiences and positive birth outcomes in hypermobility (1).
This maternity tool may be helpful to guide discussion with care providers and was created as part of the “Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders” project (4).
Evidence-based guidelines for childbearing with hEDS/HSD
In January of 2024, guidelines for childbearing with hEDS/HSD were published. This was a collaboration between patients and clinicians from the International Consortium on the Ehlers Danlos syndromes and Hypermobility Spectrum Disorder.
These guidelines draw from existing research and expert opinion to provide guidance to care providers throughout pregnancy, birth, and recovery. This could be a helpful resource to share with your care team.
Breastfeeding with EDS
When we have a newborn, we are going to be spending more time in flexion – bending forward, changing nappies, feeding, and so on. This can be painful on the neck and upper back, even more so if you have hypermobility. Forward head postures get exacerbated, and shoulders get rounded forward. This can be exacerbated by fatigue because it can be harder to maintain optimal feeding positions (3).Here are a couple of ideas to help with feeding and neck pain:
- Make sure you have good cushion support. Feeding pillows like a Boppy and MyBrestfriend may help along with stacking other props and pillows as needed
- Sit in a chair with good back support so you are not leaning forward too much.
- Try to relax and let the shoulders feel heavy on your back. It’s tempting to lift shoulders up to ears.
- Keep moving in between feeding times (or changing sides): shoulder rolls, shoulder shrugs, supine arm circles, supine arm openings – things that move you out of the forward flexed posture could help.
- Try different positions to feed like side-lying and reclined. It’s important to find something that is good for you and baby. If you feel relaxed and comfortable, the baby will be too.
- For changing nappies, try and add in a couple of CAT/ COWS to move out of that flexed posture.
Some tips from the evidence-based guidelines mentioned above include (3):
- Try to avoid positions with hyperextending joints in the arms and hands
- Experiment with nursing lying down (avoid falling asleep)
- Using a mirror to check the latch rather than craning the neck
- Supplement with formula as needed
It may be helpful to work with an IBCLC lactation consultant IBCLC certified lactation consultant who can help with latching, supply issues, nipple or breast pain, feeding in challenging situations (like multiple babies or a sick child), and positioning.
Pelvic pain
Pelvic girdle pain (PGP) is common during pregnancy, but this may be more frequent during hypermobility. This is attributed to a variety of factors, including hormonal, genetic, biomechanical, metabolic, and traumatic implications. Much of the pain is thought to be due to altered biomechanics of the pelvis (5). PGP is also particularly common in the first trimester in hypermobility (3).
Some tips for managing PGP:
- Physiotherapy: working with an EDS-aware physiotherapist or physical therapist can help to strengthen and stabilize the muscles around the pelvis.
- Manual therapy with someone aware of hEDS/HSD: gentle pregnancy massage can be very relieving. I lived in Japan for my first pregnancy and had a wonderful pregnancy shiatsu. Gentle is key some techniques to look for include: soft tissue mobility, myofascial release, positional release/indirect myofascial techniques (3).
- Focus on stabilization: all over the body is key – not just the pelvis.
- Work on proprioception: whole body awareness and proprioception, especially in gait.
- Pelvic/SI belts: I used one of these in my first pregnancy when I had pain. I did not have any PGP in my second pregnancy. These belts can help stabilize the pelvic joints and reduce pain.
- Appropriate exercise: low impact like Pilates or specific prenatal classes can help. Be careful about stretching though, we don’t need stretching at this time of life.
- Definitely avoid long levers if you have PGP, like side lying leg exercises where we lift a long leg up and down, for example. Keep everything aligned and movements smaller than normal, and avoid stretching that area. You can also reduce to range to avoid strain.
- Postural awareness: as we grow, there are going to be additional strains on the body. The front body becomes heavier which can cause postural changes. This could impact a hypermobile body more – already lax shoulders being pulled forward, lumbar lordosis increasing. Working on postural awareness can really help. See this video on organizing posture.
- Avoid heavy lifting or straining: My PGP started in my first pregnancy when I lifted a heavy suitcase. Clearly, not the right thing to do in hindsight, but I was on my own and did it. Ask someone else to help with tasks like this. Don’t be tempted to do it yourself.
- Remember post-partum recovery too: the ligaments will still be lax. We will be so busy with our new baby, we can neglect ourselves. Working with a therapist on rebuilding stability and strengthen is important too.
It may also be helpful to work with pelvic floor specialist physical therapist before and/or after birth.
If chronic pelvic girdle pain develops it’s worth getting multi-disciplinary care including psychology (this is a difficult condition and is associated with increased anxiety and depression), pain management, physiotherapy, and rheumatology (2). The Pelvic Partnership is a great resource for PGP and they are EDS aware.
Managing back pain
Back pain, and especially low back pain may increase during pregnancy (3). Here are my suggestions for things you can try to support yourself:
- Posture is going to become more important as the baby grows and the centre of gravity shifts. This can put extra strain on the back. Working on posture before pregnancy can be super helpful so that body awareness and alignment are already in place.
- Gentle pregnancy exercises will help – like pelvic tilts, CATs, and a child’s pose. Remember after the 1st trimester, avoid exercises which require a fully supine position by using a wedge. We’ve had many mums through The Zebra Club, and we adapted the exercises with a pregnancy wedge. They can still move and keep strong, but the wedge keeps them slightly propped up.
- Sleep support – many people find the large full-length pregnancy pillows helpful and placing a pillow between the knees helps pelvic alignment. Sleeping on your left side improves blood flow.
- A well-balanced diet to help reduce inflammation and keep tissues hydrated. Speak to a registered nutritionist or dietician who is EDS-aware for more guidance here.
Mental health considerations
Existing mental health conditions like anxiety and depression may become worse during pregnancy (3). If this is something you have experience with it may help to have a care team or plan in place. Counseling can be really beneficial in the prevention of postpartum depression (PPD) if you have a history of depression (5).
Nearly 1 in 7 people who give birth will experience PPD within the first year after childbirth. This exact cause isn’t known but is thought to be the result of a combo of hormonal changes, genetic predisposition, difficult pregnancy, difficult birth, and more. Signs of PPD can include persistent sadness, sleep disturbances, low self-esteem, feelings of humiliation, irritability, anxiety, and difficulties bonding with baby (5).
It can be hard to ask for help during this time that society says is supposed to be happy – it is estimated that 50% of cases go undiagnosed (6). When 1 in 7 experience this, it is not uncommon or rare, and you are not alone. You can ask your PCP or GP for support. Other resources include:
- For immediate help in the US: The National Maternal Mental Health Hotline (1-833-TLC-MAMA or 1-833-852-6262). They have a trained counselor is available 24/7
- Nonemergent support (US): Post Partum Support International
- Urgent support in the UK: Call Samaritans on 116 123
- Non-emergent support (UK): Maternal Mental Health Alliance has directories for national and local support agencies
- For immediate help in Australia: Call Lifeline 24 hours a day at 13 11 14
- Non-emergent support in Australia: PANDA (Perinatal Anxiety and Depression Australia). This helpline provides counseling and information to support mental health and wellbeing. PANDA is available Monday to Friday, 9 AM–7 PM. You can call them at 1300 726 306.
While this video is for “text-neck,” it could also be called “parent-neck.” This is good for any time we are bending and collapsing into flexion.
FAQ:
Does EDS make a pregnancy high-risk?
The most common form of EDS, hEDS/HSD does not necessarily make pregnancy high-risk though there are increased chances of complications. Vascular EDS does make a pregnancy high risk. Each person with hypermobility is an individual and should consult with their care team about risks associated with their particular situation.
Is it harder to get pregnant with EDS?
There has been a study that reported lower rates of fertility, yet another did not find issues with conception. This is something that needs further research.
Can EDS be passed on to children?
Yes, EDS is a genetic condition that can be inherited. The pattern of inheritance depends on the type of EDS. Someone with hEDS has a 50% chance of passing it to their child.
Literature Review and Research by Catherine Nation, MSc, PhD
Works Cited
- Pearce, et al. (2023) Childbearing with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders: A Large International Survey of Outcomes and Complications. International Journal of Environmental Research and Public Health.
- Pezaro, et al. (2021) A clinical update on hypermobile Ehlers-Danlos syndrome during pregnancy, birth and beyond. British Journal of Midwifery.
- Pezaro, et al. (2024) 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.
- Pearce, et al. (2023).Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. International Journal of Environmental Research and Public Health.
- Ali, et al. (2020) Pelvic Girdle Pain, Hypermobility Spectrum Disorder and Hypermobility-Type Ehlers-Danlos Syndrome: A Narrative Literature Review. Journal of Clinical Medicine.
- Carlson, et al. (2024) Postpartum Depression. National Library of Medicine: StatPearls.
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