My husband may have Huntington’s Disease, we don’t know, and we don’t want to know. Six years ago I gave birth to our gorgeous twin babies and we know for sure that they don’t carry the gene.
Finding out my husband’s (boyfriend at the time) Mum had Huntington’s and immediately discovering that he also had a 50/50 chance of having it too was terrifying and heart-breaking, and all those other horrible emotions that bring you to a very dark place. I think it was harder since we didn’t know anything about Huntington’s at the time and we had to hunt for information to understand it. We did our research and there was of course lots of crying and worrying. At the time we got lots of support and information we needed from the Huntington’s Disease Association of Ireland and we finally came to a place of acceptance that this is something we may have to deal with in the future. After a time, life got back to normal and we put it to the back of our minds as much as possible.
Then we got married and decided we wanted kids. We were still not ready to find out if my husband has the Huntington’s gene and thought our only options were to either go ahead and hope our children would not have the gene or make a decision that we would not have children. I wasn’t comfortable with either option so spoke to our GP. She suggested PGD, which is an extra step in the IVF process where they complete a genetic test on cells removed from embryos to avoid a genetic disease for which a couple is at risk.
I spent some time on the internet researching clinics at home and abroad and sent an email to all clinics explaining our situation and setting out my main request – was it possible to have PGD but not find out if they found any embryos with Huntington’s disease? After all, this was our main reason for going down this route – we were not ready to find out if my husband had the gene. We were reassured to find out that this was possible.
This was something that we wanted to keep checking at the beginning. For example, we had to fill in in some standard forms about our medical history and myself, my husband and both his parents had to send blood samples to the clinic. I added a note reminding them that we did not want any results from these blood tests.
The whole process was actually okay. Although the clinic we chose was abroad I had to find a local GP to support me. My doctor at home was great, and the clinic overseas was lovely too. Everybody we met throughout the process was kind and supportive and it wasn’t too stressful or even too invasive. Along the way there were prescriptions, scans, some needles (!), an egg retrieval process that wasn’t as bad as I expected and then finally the egg transfer.
The whole experience really wasn’t as stressful as I expected, the worst part about it was the two week wait after the transfer. A whole two weeks of waiting to see if it worked. It did though and we couldn’t be happier.
If you decide to take this journey, I truly hope you are as lucky as we are. We now have six year-old twins and I don’t have to worry that they carry the gene. Yes, we still face challenges ahead with Huntington’s impacting our family and we may face more challenges in the future if my husband or sister in law have the gene but the medical world is always moving forward so I have hope that treatment plans or medical trials are always improving and that someone will find the breakthrough that the community is desperate for. Until then, it’s important to create more awareness so that people are aware of this disease so we can look to them to support our fight and so that they understand and support those that suffer from Huntington’s and not judge them incorrectly.
By Siobhan