Pregnancy and Children
Pregnancy.. It almost appears as a taboo topic of conversation at least when talking about the real details. It is always about the baby's gender, how far along you are, what names you like or don't like, baby showers, due dates, etc. How often are the nitty gritty details talked about? When do we talk about the complications, struggles, risks, downsides? These aren't talked about often in a typical pregnancy let alone in an EDS pregnancy.
There is so much that is not talked about and discussed. Far more than what is touched on here. However this talk of pregnancy leads to the reality of children. Having talked to a lot of people who don't have to worry about EDS or genetic disorders they think about and worry about things like SIDS, Breast vs. Bottle, when to start baby food. They think about things like activities the child might like, etc. But as a mother who has EDS and a child who is not typically old enough to be tested this isn't what I think about. I don't find myself stressing over the "typical" things. I find myself worrying that she will have EDS and it won't be diagnosed yet and children are accident prone. I worry about not having a doctor who understands or believes in EDS and passes judgement instead of help. That isn't to say that I don't think of all the other things too, but that isn't what I spent/spend most of my time worrying about. I worry about if the odds weren't in her favor and she does have EDS. I worry about having to tell her "no, you can't do that like all the other kids because you get hurt a lot easier." I worry about how my having EDS will affect my child(ren) as they grow. Will I be able to be active and present in all the things they do? Or will I have to constantly be telling them that "I am in too much pain" or "I am not feeling good today." I worry about whether they will understand all of this at some point and make them more compassionate and understanding to others who are "different" or if it will make them resentful. Since these things aren't talked about, the question remains how much of this is typical, and how much of this is a chronic illness worry?
- The first challenge with deciding to have a family is completely different in an EDS pregnancy versus a typical one. In a typical pregnancy the first "challenge" is deciding when the right time is. In an EDS pregnancy the first challenge is having to weight the odds of passing on EDS to your children. There are lots of people who decide that the risks and odds are not worth it and end up choosing not to have biological children, or children in general.
- Another struggle is that during pregnancy hormones are released to allow for the body to stretch and being elastic like. This can cause issues with those who have EDS because they are already stretchy and elastic like. When adding in the pregnancy it can lead to injuries. Personally, I spent nearly my entire pregnancy on modified bed rest because I was constantly dislocating my joints. I spent from my first trimester through the end using crutches as needed because I simply could not walk most of the time. In addition to that I also had what the doctors referred to it as, "my neck and spine were dislocating."
- The dislocations mentioned previously leads to another issue with pregnancy in EDS patients. PAIN. The pain can go one or two ways, it can get better or it can get worse. I know some who have had pregnancies with multiples and felt great, while others had single pregnancies and felt a million times worse. The pain is something that is hard to control and manage while pregnant. Pain medications are a risk and can lead to withdrawal and potential for CPS to be called in. On the other hand, not treating the pain can led to complications of its own. I personally struggled to be able to eat, partially because pain makes me lose my appetite and ability to eat.
- No one talks about what it is like to pass out nearly everyday while you are pregnant. No one talks about what it is like to be taken by ambulance and have them rush you into exam rooms to check the baby. No one prepares you for them telling you that you need to have testing done that may or may not affect your unborn child negatively. No one prepares you for the scare that is being told there may be something wrong with you medically, like an artery dissection, while saying that you have to sign a waiver in case anything happens negatively to the unborn child.
- Once you make it through the entire pregnancy then comes the next big hurdle, delivery. Which risks and which options are best? Both natural and c section offer their own sets of risks and concerns. It is a decision that can not be made lightly and without considering all the questions like; Will you be able to push without dislocating? Will any of the anesthetics work? Will the incisions, or tears heal properly? These are just some of the questions that are brought up when deciding on a birth plan.
There is so much that is not talked about and discussed. Far more than what is touched on here. However this talk of pregnancy leads to the reality of children. Having talked to a lot of people who don't have to worry about EDS or genetic disorders they think about and worry about things like SIDS, Breast vs. Bottle, when to start baby food. They think about things like activities the child might like, etc. But as a mother who has EDS and a child who is not typically old enough to be tested this isn't what I think about. I don't find myself stressing over the "typical" things. I find myself worrying that she will have EDS and it won't be diagnosed yet and children are accident prone. I worry about not having a doctor who understands or believes in EDS and passes judgement instead of help. That isn't to say that I don't think of all the other things too, but that isn't what I spent/spend most of my time worrying about. I worry about if the odds weren't in her favor and she does have EDS. I worry about having to tell her "no, you can't do that like all the other kids because you get hurt a lot easier." I worry about how my having EDS will affect my child(ren) as they grow. Will I be able to be active and present in all the things they do? Or will I have to constantly be telling them that "I am in too much pain" or "I am not feeling good today." I worry about whether they will understand all of this at some point and make them more compassionate and understanding to others who are "different" or if it will make them resentful. Since these things aren't talked about, the question remains how much of this is typical, and how much of this is a chronic illness worry?
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