Ehlers-Danlos Syndrome Support Group

well i've heard and red stories about such things happening. an my ob recommended i dont get pregnant because i have vascular. of course i cant get preg any ways because of the PCOS but there is good news, i had an older friend who had EDS as well, she was 45. she was about to have 3 kids but all three children were diagnosed with eds. we have a 50/50 chance of passing it to our children if we can handle the stress. my friend was able to handle the stress however 4 months after the birth of her 3rd child she died from a blood vessle burst and her heart gave out. i would love to have children but i wont risk the unborn childs life nor mine to fullfil a dream. it would be to much. an because i have vascular the chances of dying is greater, i wont risk giving birth an having my child have no mother so my personal opinion is i wont have children. i would rather adopt. an from your history i would recommend the same thing. but it is a personal matter and it depends were you stand on the matter. for me, i wont have children because my chances of the risks involved are far to high for me an i cant bring myself to think of a child with out its mother, its just....i suppose not fair.

Thank you very much for that--I completely agree on it not being fair to have a child and taking the risk of them not being able to have a mom. I'll adopt children because I want to try and preserve my body as long as I can, take care of my kids, and be there for them. It was just one of those things I wanted others opinions on and hard to hear from the doctor--ya know what I mean?! Anyways....thank you so much for your replay WolfAngle--it really helps put things in perspective and have a more comforting feeling about the situation!

it was my pleasure. at you know your not the only one with this type of worry above your head. i've got it as well but i've made up my mind about kids. adopt an see them grow up!

Hi...I think it's one of those things that you have to decide yourself. How much do you want children? - what risks are you willing to take? - and how much discomfort are you willing to put up with?

For me the decision not to have children was easy. By the time me & my husband were ready to start a family, I already had debilitating back pain which was eventually diagnosed as EDS type 3. I was (and am) on way too many drugs, my back couldn't take it the strain, and anyway as soon as my husband realized I had an incurable condition our marriage fell apart.

But sometimes I do wonder what my life would have been like if we'd had kids right away....I try to tell myself that it's all for the best and that I wouldn't have wanted to pass EDS on to a child and then seen him/her suffering like I have suffered...but there's always this niggling feeling in the back of my mind that I would have liked to be a mum.

It's a really difficult decision that you really have to think long and hard about.

Hi! I wanted to let you know that you will not have arteries rupturing or anything like that because your type is the Hypermobility type. The main problems you could have during pregnancy would be joint dislocations and premature labor/miscarriage. I have EDS - Hypermobility type and was able to deliver a healthy son by c-section. I had my son before I found out I had EDS so we went through the pregnancy like any person without EDS would. I did go into premature labor around 28 weeks, but the labor was stopped with medicine in the hospital and I was put on bedrest for a few weeks. My son ended up coming via c-section at 37 weeks because he was breech, not because of complications related to my EDS. The c-section and recovery went very well and I had no complications. Again, this is because it's the hypermobility type, not a type that typically weakens your internal organs and blood vessels.
The reason that it's possible to go into labor prematurely is because your cervix may be weak. The cervix has the same type of tissue as the joints, which is why it may be affected while other internal body parts aren't affected.
My EDS is not severe. Right now I have a bad ankle because I twisted it a few weeks back and it just wont heal but that's the worst of my troubles. I have never had to go into surgery for my joint problems or anything like you have.
I may have been able to better sustain pregnancy because my EDS is not severe, I don't know. Yours seems to be pretty troublesome, so I can't say for sure that it would be a good idea for you to have a baby. The ONLY reason I say that, though, is because your joints become looser during pregnancy and that could be a problem if your joints are already super loose and fragile from EDS. I guess it depends on how much pain you're willing to handle and how much sitting you're willing to do to have a baby of your very own. If you do get pregnant, though, just take it easy. Don't do anything stressful on your joints and rest a lot. You may just have a lot of joint pain during pregnancy, but the risk for new or repeat dislocations will be greater simply because pregancy makes your joints looser than when you are not pregnant. Having been through pregnancy before, I am aware of the risks and they seem very minimal. I am going to try again for another child very soon.
One more thing, doctors sometimes lump all the EDS categories together and give you recommendations based on other types, simply because they don't have thorough knowledge of all the types and their related symptoms/problems. I hope I have helped you and not confused you! Good luck.

Hi there,
I know this was posted a little while ago, but wanted to add my response anyway. In regards to what rtbour had said about hypermobility type not being at risk for blood vessle rupture and so on, I think it's important to point out that there actually is that risk in all EDS types. Some of the difficulties in treating EDS is that although there are the classifications, the lines can be very blurred and every individual has a different set of symptoms, sometimes primarily in one type, but often still having bits and pieces from other types. It is very common for someone with hypermobility type to have vascular symptoms as well, so to say there is no risk is of vascular complications just isn't the case, unfortunately. If you keep up with ednf.org at all, you will read that they recommend all EDS types be treated with as much care and caution as with the vascular type as people with types other than vascular have had vascular complications and precautions should be taken regardless of type. Sorry if I've come across as lecturing, I just feel it's an important matter to address being that being aware of your risks is so critical. The last thing anyone needs is to think of a ruptured bowel as bad gas! Anyhow, on the topic of child-bearing, the severity of my EDS progressed instensly after pregnancy and childbirth. I had yet to be diagnosed at the time of my pregnancy and not knowing, therefore not being able to take preventitive actions, as well as the unavoidable loosening of already loose joints during pregnancy has pretty much completely disabled me. Obviously, every single EDS patient has a different relationship with this disease, however, your hips being as unstable as they already are could most likely not tolerate the extra weight and laxity of pregnancy. You'll end up like with with an amazingly active toddler and unable to walk. If I could go back, I'd do it all again, even with the knowledge of the pain and physical deterioration it would cause, because loving a child is truly the most beautiful thing in life. But, it doesn't have to be biologically your child to be *your* child. Have you thought about a surrogate? That's always a possiblity. The chance of passing on EDS is definitely worth taking into consideration, everytime I see my 2 year old bend in half backwards or pick her nose with her toe I worry. But just knowing the possible effects gives us the chance to make her life easier. She doesn't necessarily have to endure the pain I have. Since she's a very physical child, like many of us were in our younger years, we are going to give her outlets for her physicality that wont damage her joints like ballet did mine. Like swimming for instance. We can also teach her how to monitor her energy output before chronic fatigue has a chance to overcome her. So, even with EDS being passed on, it is still possible to provide a fulfilling life for a child. Oh, I wouldn't suggest trying to be a single parent though...I did that for the first two years of my child's life and it took everything in me to meet all her needs, I did it, but looking back I have no idea how I did. Having a support system is so important, even for someone raising a child without a disability! Anyway, this turned into way more of a ramble than I had intended. I hope whatever you decide brings you happiness as our sources of happiness are our life support!

EDS and pregnancy is considered HIGH RISK. There are OBGYN's who specialize in high risk, start there and make sure they are educated about EDS.

Attempting a VBAC is suicidal as is multiple c-sections.

Important to remember that EDS classifications are not cookie cutter. The hypermobility is about support structures and gets much worse with pregnancy. You can blow out lots of things during labor, one example is your brain.

Genetics is a crap shoot EDS or not. I don't mean to dismiss the 50/50 odds, that is very significant but.. please worry more about your health and remaining with the people you love and those who need you.

Three motherless children is heartbreaking!

I did not find out about my EDS 3 until I was pregnant with my daughter. I had a mild case until then, and it was missed. The pregnancy sent it into overdrive. My little girl was born at 32 weeks (healthy so far-thank god)
About 3 months later, I developed gall stones, and my gall bladder actually ruptured! I was diagnosed about 6 month after that when I kept getting joint injuries for little or no reason.
Now 5, my daughter is very flexible, and already has to wear orthotics in her shoes. She sees a pediatric orto doc, who says she's too young to be dx'ed yet-but I still worry. I will not have any more children.