S and I met with a clinical social worker in the neurology department this week. We weren't sure what to expect in terms of next steps. We weren't sure what is generally covered with insurance and if there is an appropriate way to ask without being red flagged. Essentially she didn't give us any new information but reinforced the fact that we just need to talk to our insurance company to figure all of that out. I have a feeling we will be learning a lot about insurance over the next few years.
The one thing we did get from our experience is that if I do have the HD gene, we will try to go the PDG (preimplantation genetic diagnosis) as part of IVF route (in vitro fertilization) in order to have a baby. The good news is that couples do IVF all the time for a variety of reasons and while there may be stress and complications, at the end of the day we will have a healthy baby. Below are some of the choices that people who have a genetic disease have in terms of having kids. I'm not saying that any of the below are right or wrong, but some just aren't for us. And, hopefully we don't even need to have this discussion and I will be HD free. I think it's incredible that there are so many options.
- Some people who have Huntington's Disease decide not to have children at all. They may not want their children to go through what they had to. Seeing a parent deteriorate before your eyes is not a fun thing. Hopefully there is a cure and that would never have to happen for our kids. We want kids. This isn't for us.
- With adoption or egg donation, you know that your child does not have your genes and, therefore, does not have HD. I've always wanted to be pregnant. With egg donation, you can still be pregnant, but genetically it isn't your baby. Of course we would do this if this was our only option. But it isn't the only option.
- You can always have a baby the old fashioned way. In this case, you can do prenatal testing at 10-12 weeks. If the HD genetic abnormality is detected, you can abort the pregnancy. When S and I were talking about our options this seemed like the worst case scenario. And, honestly, I don't think we could go through with it. Again, I'm not saying that this is wrong and I'm sure that people who do it are doing it for the right reasons. But it isn't for us.
- PDG (preimplantation genetic diagnosis) IVF is truly incredible. As you probably know, IVF involves retrieving eggs and fertilizing them outside the body before transferring the embryo back into the body. With PDG, doctors will remove a single cell from the embryos to test for Huntington's Disease. After testing, they will implant the healthy, "normal" embryo(s). A part of me felt sad for the discarded embryos, but then I reminded myself that that would be like getting sad every time I had my period (sorry to the men who are reading this). The procedure is more costly and time-consuming, but seems like the best option for us. I've read a few discussion boards about PDG and, of course, there are people out there who don't think it's "natural". But, as someone posted, driving a car isn't "natural" and we do that every day. Also, your chances of having multiples also increases with IVF, but what's meant to be is meant to be, right?
Again, I hope none of this is necessary for us, but it makes me feel better to know that we have options and we are preparing for my results. It's wild that when my brother and I were born, options like this didn't even exist. It wasn't until '93 that scientists finally isolated the HD gene and testing was possible. Scientifically there is so much happening now and hopefully the cure is around the corner.