So where do I fit?
I don’t really fit with the infirtility crowd that I mix with in this crazy club that is the baby loss community. My inability to have kids is not an inability to or a difficuly in achieveing pregnancy (although the success of such a venture is there to be debated… I mean so far not such a great track record.)
My inability to have biological children is arguably a choice (which I hear regularly from my family… really guys? But that is another post for another day.) But to sum it up the gene mutation that they think causes some of my ‘issues’ hasn’t affected my family, they have the lesser one- however the risk that I pass my one (the nasty ass one) is 95%.
So any kid I have has a 95% chance of inheriting the more severe form of Hypermobility Syndrome and all the other issues with things like poor digestion, increaced risk of food intollwrance, excess scar tissue, slow healing, weakened immune system etc… that so often accompany it.
[edit, I have sinve been diagnosed with hEDS, Hypermobile Ehlers Danlos Syndrome.]
So while they (my doctors/nurses/physios/etc) don’t actually know what has caused the issues with my central nervous system. The best guesses are it could either be (and these are only the most likely candidates as offered by the pain clinic/ my newest consultant… not the other ones that have been debunked- (which is why I also have 7 certificates to prove my sanity as 1 evidently wasn’t enough…) because making up a chronic illness and generally sucking at life is totally my idea of fun?!?!?
I mean does a dislocated shoulder look like lying for attention to you? Is the fact you can see it out of it’s socket and see the deformity in my whole skeletal system not enough?)
A. The Opiate based medication I was on for years caused synapse damage. Or
B. The Hypermobility and joint issues made my skeleton grow wrong (ode to my wonkey legs), which causes constant pain, which in turn means my nervous system grew a little off (what a lovely euphamism) when it came to getting messages during early puberty when your brain structure changes (literally. Freaky much). So wham! Permanent issues with receiving signals to my brain.
C. Some other reason that they can’t work out because some people just gret chronic pain, and human brains and bodies are complex.
I can get pregnant, I know that (obviously or you wouldn’t be reading this.)
I also know that my miscarriage risk is rated from as low as 20% for secondary miscarriage ‘source the miscarriage association uk’ (without the secondary factors of my health.) And then according to other research the risk of a second miscarriage for a woman of my age who has had one previously could be 30% (mostly American rather than UK sites/books to numerous to list off the top of my head.)
I also know from my doctors that the severe type of genetic hypermobility that I have has been shown in a recent study to up the risk of miscarriage for any pregnancy before of after losses at 13% approximately, and a larger study is currently underway in Switzerland; so I await those results (and hours more of research to come).
So my approximate risk of reoccuring miscarriage could be as low as 20% or 33% or even as high as 43% from other sources when you factor in everything else.
Basically nobody has a sodding clue. And I am probably still over analysing everything as is my want.
So in summary I know I can get pregnant. I just have no idea if there are any other issues regarding my body that could cause another miscarriage.
I also know that I can’t risk another pregnancy with my genetics as the inheritance risk is too high.
Recently my health has been fairly good- bar some stomach issues and a few minor dislocations I have been leading a reasonably major health issue free existence for a few months. But the day before yesterday I dislocated my shoulder (by rolling over in bed…) and it Would. Not. Go. Back. In 😱
I could get it half way back in the socket so that it was a sublocation, but it was like that for 19 hours! FML.
Sometimes on good days I catch myself thinking ‘it wouldn’t be that bad if…’ and then I have days like this where I fully dislocate a shoulder just by rolling over in bed and I’m back to ‘Nope. Never again. Don’t be a dumbass Zoë and get a grip’.
Every time I have a major joint dislocation or a flare up I am reminded not only that yeah this SUCKS! But also of why I am not having/trying for biological children. It also means I worry that I won’t be considered fit for adoption because I am not that great health wise. I try not to worry and to have faith in the future but I can’t pretend I am good at that.
I don’t think I will ever fully come to terms with not having biological children. It doesn’t make me want to adopt any less. I have wanted to adopt for as long as I can remember thinking about having a family. I was fine with it until Emmet, and then I wasn’t. It’s hard to explain.
I didn’t miss what I had never had or expected to have, before October 2016 I was beyond fine with never having biological children. It just didn’t bother me. Add my health into the mix and it felt like the universe had decided for me. I didn’t feel like I had been robbed of anything, I just felt like I was supposed to take the route of adoption- I still feel like that is the best route for building our family, I just now feel particularly robbed.
It feels less now like I had a choice. I didn’t choose to be ill, and I don’t choose to pass it on. I can make that choice, although it doesn’t feel very much like making one. It feels rather more like not having a choice at all. The point of being a parent as far as I can determine is loving and protecting your children, and as far as I am concerned, for me that also means the ones that don’t exist in the first place. By not having biological children I am protecting them from a hypothetical life of pain.
That is arguably my choice, but it also isn‘t a choice I want to make.
As always we love to hear your voices and opinions.
Love and Support always,
Surviving Miscarriage Together x