You are not alone.
Pregnancy and Ehlers-Danlos syndrome – reason for concern?
I see a fair amount of discussion among patients with Ehlers-Danlos syndrome/Joint Hypermobility Syndrome (EDS/JHS) about the potential risks of pregnancy with our condition. As potential patients, do we need to be concerned about pregnancy? Will our bodies hold together? Can we get through delivery? Will we develop POTS after delivery? Do we need to take special precautions? Am I asking too many questions?
Everyone is different, of course, even in the healthy population! There are inherent risks in every pregnancy and as is true of much in life, there are no guarantees. When we decide to become parents, we know that we are beginning an adventure, and it is one that likely does not end with delivery. Both parents take on the risks of pregnancy, but it’s the moms who must take on the additional concerns of what the heck will happen to my body?! Throw in a condition such as EDS/POTS, and the questions multiply.
Women with EDS/JHS are flexible, of course. We can bend and stretch in an astounding number of ways – which sounds like it may be helpful when squeezing out a watermelon, right? But is our tissue more fragile? Could we be more prone to premature delivery, or could we have difficulty carrying the baby to term?
Until recently, we’ve had to just guess based on instinct and anecdotal reports. Finally, someone took a closer look at this question and I wanted to share with you what they found.
I’m happy to report that a review 314 births by moms with EDS/JHS (as compared to 1,247,864 non-EDS/JHS births) indicates that we are no more likely to have adverse outcomes than our non-bendable friends. That included no higher risks of premature rupture of membranes, stillbirths, small gestational age, caesarean section, or low Apgar score. The analysis was completed by researchers in Sweden by studying the Swedish Patient Register and the Medical Birth Register and can be found here.
So is this THE answer to our concerns if we have EDS/JHS? It is comforting, but the only thought I have is that we still do not know the genes involved in the majority of patients with EDS/JHS. Until we know fully understand the genetics, advice must be general for all bendies. As we learn more, advice can be more tailored to our specific presentation (for example, this doesn’t address vascular EDS, Loeys-Dietz syndrome, and other narrowed classifications of EDS/JHS specifically).
This study also doesn’t answer the difficult question, “How worried should I be about passing on EDS/JHS to my children?” That is a question for another time, my friends – and it is an important discussion!
As for my family, I had my children before I developed POTS (Postural Orthostatic Tachycardia Syndrome), and before I knew I was an EDS/JHS patient. Pregnancy and delivery went fine for me – no, the real challenge came eight years later when I became disabled by POTS. When my kids also developed POTS at a young age (and no one had answers for us), it was all hands on deck to get answers! This decade-long challenge eclipsed the pregnancy concerns I had by a ten-year mile. Who could have guessed what challenges awaited our family those days in the delivery room? For most of us with “invisible illnesses”, we don’t see it coming, but we learn to meet every challenge as gracefully as possible – one day at a time.
Gentle hugs to you all,
To learn more about Dr. Driscoll’s journey for answers to POTS and other invisible illnesses, you may be interested in her book The Driscoll Theory.
If you suffer with POTS, check out the free brochure “Just Diagnosed with POTS? The Top 4 Must-Do’s” available at www.POTSCare.com.
Dr. Diana Driscoll is now working full time at POTS Care. A recovered POTS/EDS patient, and mom of children who have now also recovered, she has been instrumental in finding the underlying medical conditions responsible for this and other potentially disabling “invisible” illnesses.
Sundelin HE et al, Pregnancy outcome in Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome. Acta Obstet Gynecol Scand. 2016 Oct 14.PMID:27743500