TSC: Pregnancy, Family Planning, and Coping with the Reality of Things

In general, most people that want to start a family, can just have sex and then hope for the best. But what about the people who have disorders that love children with all of their hearts, but worry they will struggle to have a child of their own? Well, now that I've introduced you to the depressing disorder Tuberous Sclerosis Complex itself, I am going to explore the idea of pregnancy and planning a family while living with TSC. First off, I have never been pregnant, but I've thought about what would happen when I discover I am expecting.

Pregnancy:

The thing is, when you have Tuberous Sclerosis, no matter how mild or severe your case is, it won't be as exciting as most pregnancies. You're going to feel fear as well as excitement, and there will also be a lot of stress; but why is that? Well, it is because even though you have found that you are able to have children, things could go wrong, and that's what makes it scary.

As a woman with TSC, if you get pregnant, there are a few things that are likely to happen. Your medicine could get changed, only because it could harm the baby in one way or another, and it could affect your ability to breastfeed. You may also have to go see the doctor a little more often, depending on how well the pregnancy is going, and depending on how severe/mild your case is. But for some of you, being born with TSC like I was means that if you haven't experienced pregnancy yet, you may already have an idea of what to expect, even if your condition isn't as severe as others. However it's always good to be prepared, and this of course means you do your research, talk to a geneticist, and have everything ready.

But if you are unable to have babies, then you know, adoption is always available—that or being a foster parent for those who need a home to stay in. We must remember though, no matter what choice we make, it won’t be an easy thing to deal with.

Family planning:

In regards to family planning, if you are wanting to start a family, but you have TSC, you must go see a geneticist while you and your spouse are figuring things out, and that is absolutely a must. I've always known it's something I will end up doing, but you can never say when it will happen because you know, the future is an unpredictable thing.

Another option you can go with, if desired, is also something I have tucked away for future references, and that is 'egg harvesting'; which is where they will take the woman’s egg cell, and do what they can to remove any hint of TSC from it. Unfortunately though, while it is one of the most expensive procedures, another thing to remember is, it doesn't always work.

Even though this may not seem like a family planning thing—it does have to do with the topic, simply because while it can result in pregnancy, it is something that needs to be discussed beforehand, like any other family planning matters. But despite it all, it can sound like a tempting thing to go for, even if it means playing the waiting game a little. After a doctor takes out your healthiest egg, removes any trace of TSC; and your partner's sperm cell has been fertilized; then the process has become a little easier, but as I mentioned already, you do have to wait a little before they contact you so they can insert the embryo.

As amazing as it sounds, it's a complicated process. And as mentioned, it won't always work the first time and that means you may have to wait a while before coming back to try again. And the heartbreaking thing is, for some, it doesn't work at all. The other option that some will go with, is finding someone to be their surrogate. But, of course this option would only be necessary, if you happen to deal with infertility problems, alongside having TSC.

But like the other things mentioned, this process is also just as complicated, and is easier said than done. Reason being is, like most family planning related decisions, it's a huge decision that will need lots of planning and discussing. And another thing to remember is, not every person will be a good match, so not just anyone can be the surrogate. But all that aside, if you are fertile, but happen to have TSC, your family planning options will be limited.

Coping:

And for the final part of this story, I want to discuss coping and a little about adoption. As I had already mentioned, adopting a child is another option that can be used when there's no other option left. But like getting a surrogate, and doing "egg harvesting", it's a complicated process, things can still go wrong and it is also insanely expensive, if you count all the food and supplies you'd be buying. But you know, for some, it won't always be as scary as it seems because there are plenty couples that go ahead with it after thinking long and hard about it. It is 100% worth it, especially if this is their only choice, when they deeply desire to have babies.

Even if some want to adopt a child, it sometimes is just too expensive to go through with, and I for one can only imagine how hard that can be to deal with. Some couples cope just by waiting a while before trying again, because really, there's only so much you can do. I'm no pro on what mental and emotional techniques can help couples deal with this sort of thing, and even though I am not experienced with any of this yet, I know very well that it can take a year or two for a couple to truly be ready to pick out the option of adoption.

For couples that deal with TSC, whether it be that the mother has it, the father does, or both; accepting that maybe having a family isn't meant to go the way they hope it will can be a challenging thing to recover from. Sometimes therapy is the best way to go when it comes to finding ways to recover. Because I haven't experienced pregnancy yet, but I know how much a child can mean to you, it can really affect you in different ways.

Being able to accept that you maybe won't have any children, in any way at all is a big challenge. And because I don't know how my future is going to go for me, as a woman with TSC, there are negative thoughts that get the best of me a fair bit; and even when the issue has nothing to do with family planning or pregnancy itself, you know that it's hard to just erase such thoughts from the mind.

Sometimes therapy will/can help out, as some therapists are able to offer small techniques that can help you help yourself and your partner. But sometimes, you will have to just keep yourself busy, because in the end there isn't much you can do but take your time with waiting before feeling ready to try again.

If there are any TSC women on their own, looking to have children, it can be an even tougher fight. Sometimes she won't have the support she needs to move on forward. Sometimes the stress is just too much and then, like many others, you either can do therapy, and hope for the best, or just keep yourself busy with work or other things.

With my own story, I have many issues that I am facing. My outlooks on different topics are skewed, and it's affecting my thoughts feelings and views on the world and the topics themselves. As a TSC woman, I have somehow made myself believe I can't have babies even though, I haven't even attempted to have sex at all or reproduce. Makes me sound dumb, doesn't it? Not only that, I've let myself put some blame on the disorder, though its never gotten in the way of much. Nonetheless, pregnancy, family planning and getting pregnant itself is no walk in the park for any of us. Thanks for reading my story, and taking the time to understand a little more about this disorder.