Okay. So, The Hubbs’ sister asked me recently whether or not we’d exhausted all our options in terms of having children and I don’t remember whether or not I’d written anything here in detail about our thoughts on having a family and our reasons for it.
In case anyone was wondering, but never asked for fear of offending, or hurting my feelings, or was just too uncomfortable asking yet still curious about the answer, here it is in probably more detail than you’d ever want to know.
I was just feeling sorry for myself the other day is all — I had gotten in the mail a big envelope from the Pulmonary Hypertension Society of Canada (asking to see if I wanted to join their little “club” :P~ ) and at the back of their first newsletter was a question regarding pregnancy and PAH.
I didn’t realize that there was a 30-50% maternal mortality rate during pregnancy itself, which was the reason why all my doctors pretty much said at that point that we’re not allowed to have babies for absolute certain. Patients with PAH have a limited ability to cope with the sudden increase in blood volume, as well as a lot of the medications that I am taking (not just for the PAH) are extremely harmful to the fetus.
Before, it was kind of still a little “let’s keep that little smidgen bit of hope alive cuz there is a tiny, wee, little, itty bitty, minuscule chance that we could still maybe have a baby” according to my one doctor. Which btw, I always thought he was just saying this to make me feel better, but no, in fact he truly believed that because I never had any eggs to begin with, due to a completely unrelated to Lupus/Scleroderma/PAH/etc health condition, we could have probably jump-started my body to try producing eggs even though I’d had chemo.
Yes, there are people out there who have my diseases and have children — ordinarily in the case of scleroderma, they’re older and have already had their kids. In the case of lupus, there’s a chance that some women take to get pregnant after diagnosis. But with PAH — it’s basically a
50% chance of death *95% likelihood of dying [*see recent entry re: PAH & Babies] during pregnancy regardless of how many precautions you take.
We sort of discussed the idea of having a baby through other means and adopting, but really, what it boils down to is that I have progressive diseases that are really unpredictable. After discussing it at length, we’ve pretty much come to the conclusion that it’s neither fair for The Hubbs nor is it fair for the child. The same more or less goes for an adopted child — except knowing what one has to go through and the hoops that you have to jump into to make things happen, I’m pretty sure knowing my health situation automatically makes it so we are “inappropriate candidates” as parents.
The Hubbs is very strong, but should I become so seriously ill again, to the point that I can’t take care of myself and if there’s a child’s needs to take care of while I’m incapacitated, it would be an absolutely tragic situation to have him deal with on his own.
Yes, we have family and we have friends who have already been so generous with helping us thusfar, but you don’t always want to have to lean on the people you love. Sometimes you just want to live your life together through the good and the bad. But having a child in the mix, it would be completely unfair to having that little person’s needs be (unintentionally) side-lined because of what we’re dealing with, with me.
There have been days where I cannot take care of myself and The Hubbs has worked from home to deal with my problems. There have also been a few times where I’ve had to move back into my parents house for a week or two, either because The Hubbs has gotten sick and we can’t risk me getting sick, or I am sick myself and The Hubbs can’t take that much time off to keep an eye on me. I don’t think having a child will make that any easier or better for our situation.
I realize that when you have a child, that child’s needs will always come first, and you will do anything in your power to make it so, but the reality is, for us, there is also a very distinct possibility that I will die prematurely due to complications from all my combined diseases. I don’t want to have to leave The Hubbs and a child, to face the world alone.
I suppose that’s a selfish way to look at things, but it was just something I couldn’t live with, knowing that The Hubbs would end up being a single-parent, at any time, all because I wanted to bring a child into the world.
So… that was probably a lot more than you were expecting in terms of a response, and probably very depressing to read, but I hope it made sense and gives you a little insight as to why, as much as we would love to have children and there are other ways of having them, we really can’t justify doing it in our hearts.