When it was first discovered that I carry the BRCA1 gene mutation, and we had meetings with specialists in genetic cancer familial, there was mention of a procedure through IVF (invitro fertilisation) where an embryo can be tested for the gene mutation before it is implanted in a woman’s womb.
So I was 24 at this stage, and while we knew we wanted to have children at some point, it wasn’t on our mind at this particular point. We talked about it a little bit, but we both came to the conclusion that this gene mutation isn’t a life or death situation. Just because I carry it doesn’t mean I’m going to get cancer, so we figured it was a risk we were comfortable taking when it would come to us trying to have children naturally in the future.
I’ve always preached that just because you have done things a certain way or had thoughts of some sort in the past, doesn’t mean you need to keep doing this in the future. You are allowed to think differently and have a different opinion to what you have had in the past.
When I saw the Pink Hope annual conference advertised in Melbourne in June 2016 I thought this would be a great opportunity to learn a bit more about BRCA and meet some other people in a similar position to my husband and I. Pink Hope is an outstanding organisation in Australia, which was founded by a Kiwi – Krystal Barter! Pink Hope is a preventative health hub that allows every individual the necessary tools to assess, manage and reduce their risk of breast and ovarian cancer, while providing personalised support for at risk women. They started in Krystal’s house not long after she found out she carries the BRCA1 gene mutation, and has since grown in strength and reach ever since. So my husband and I went to the 2 day conference and heard from well known doctors, researchers and surgeons about all things preventative surgery, research break through, menopause and fake boobs! (I even got to feel a woman’s newly reconstructed boobies as she had just had a preventative double mastectomy with nipple sparing. I was pretty impressed with how real they look and feel!) We also heard from some women about how they discovered they carried this gene mutation, and the story of their cancer diagnosis and treatment. The fear of passing the gene onto their children was pretty common, while some people did not worry about this at all. Some have faith that science will have progressed by the time their children will be tested, and some have chosen not to have children. Some also talked about the ability to have a child through IVF, using a process called preimplantation genetic diagnosis (PDG).
To summarise an in-depth procedure, PDG basically tests a fertilised embryo for gene mutations such as BRCA and cystic fibrosis, and then embryo’s without a gene mutation are then made available to be transferred into the women’s womb in the hope that a baby will start growing. We have been told that this test is 99% accurate, which is pretty bloody spot on if you ask me.
After attending the conference, my husband and I talked a lot more about PDG. We had actually been trying to conceive a baby for about 10 months before going to the conference, so we were in a much more relatable place to be thinking about this sort of thing. What I found quite confronting, raw and just plain REAL was the fact that we have an opportunity to potentially prevent what some of the women we heard talk about have! We could actually have a child without these risks, the worry, the reality of lifetime surveillance, potentially invasive surgery and above all – without the risk of developing cancer.
WE have this opportunity! WE can make a change for the future! WE can have a child knowing I won’t be passing on these risks and realities. Our generation have that knowledge and power.
I still find this quite controversial. I mean, if my parents could have had this option twenty something years ago then neither my brother or I could be here – possibly. Tell my parents this and I can (almost! J ) guarantee that they wouldn’t have it any other way. But is that because neither of us have had cancer? Or that neither of us have had to deal with a diagnosis or treatment or remission? The guilt associated with this must be huge. It’s hard for me to comprehend as I’m not a parent, but what if I have the power NOW to prevent this in the future?! Would I feel guilty for not giving it a try?!
So after much back and forth between ourselves, my husband and I decide to talk to some professionals about the whole PGD procedure. We figure we have nothing to lose from a conversation, and it would be great to know a bit more about the practical side of this procedure. We referred ourselves to Fertility Associates in Hamilton who have been a great team to deal with.
Without even the mention of PGD or IVF, we are instructed to provide blood and semen samples for FA to analyse. My blood samples had to line up with my cycle, in particular when they were predicting I was ovulating so about day 21 (with day 1 being the first day of getting my period). Heading into our first appointment was a bit strange. I was both excited but also…. A bit embarrassed. I felt like any one seeing us walking into a fertility clinic would instantly judge us. Like getting help with a fertility issue is shameful, when it actual fact it should be empowering because these people actually want to HELP you have a baby and start a family. I was quite nervous that we would run into someone we knew, and then have to explain why we were there. Sure we had been trying to have a baby for nearly a year by then so thoughts of infertility were crossing my mind, but I’m a firm believer in “everything happens for a reason” and our time just hadn’t come up yet.
PGD Part 3
December 5, 2018
Why do we do what we do, when we know what we know?