My next VIP Mutant, Lisa Bancroft, @my_BRCA1 talks about her journey as a BRCA Mum. She opens up about her feelings towards her daughter having a 50% chance of inheriting the gene, and her options for future children. Over to you Lisa, what’s it like being a BRCA Mum?
Being diagnosed with BRCA is the most life changing event I have ever experienced, much like having a baby! I knew I was always meant to be a mummy. It has always been the only thing I have ever been certain of. Having Emma was the greatest thing I could have ever done. At the tender age of 2 and a half she has carried me through many difficult times and continues to do so in the most incredible way only a child could.
BRCA is an incredibly difficult diagnosis. For me, the hardest part has always been that now my darling Emma has a 50% chance of inheriting my mutation. It is something I battle with on a daily basis, especially as she won’t be tested until she is 18. That is 16 years of not knowing, of waiting and it is still not a certainty she will even want to be tested (although I REALLY hope she does!). However, that is also 16 years of medical advancements, of technological advancements and the possibility of new options. Who knows where we will be in the fight against cancer then. Who knows what treatment options there will be for BRCA mutants then.
Being on a BRCA journey is incredibly individual. There is no “one size fits all” and I respect every woman’s choice in relation to children and having a family knowing you have a BRCA mutation, as NONE of the decisions are easy ones to make, no matter how much they feel like “no brainers”. I can only tell you what it means to me, being a BRCA Mum and having children. At the moment I am in no place for planning more children. I am a single mum with a very lively 2 year old. When I first got my diagnosis, my initial knee jerk reaction was I wouldn’t be having any more children. This thought came with a lot of guilt. I was devastated at the thought of not having more children, but I should be more than happy with Emma right? And it wasn’t that I wasn’t so incredibly grateful for Emma but I never imagined only having one child and after a very disappointing birth, I wanted another shot at it!
After a while of processing I realised there is nothing wrong with wanting more children and it doesn’t take away from the love and gratitude I have for my Emma. So I didn’t totally eliminate the possibility of having another child, but it won’t be straight forward. For me, one of the reasons I found out about my BRCA mutation was so I could put an end to this mutant genetic line. Therefore the option for me for having more children would be PGD or Pre-implantation Genetic Diagnosis and IVF (In Vitro Fertilisation). So in layman’s terms, they take a few of my eggs, fertilise them, test them for the mutation and implant the embryos without the mutation into my uterus. Therefore the baby doesn’t inherit the mutation! This isn’t an easy decision or course of action to take (I don’t think there is anything easy with BRCA right?!) but for me it would be the only option I feel comfortable taking.
As things stand I am not in a position to plan another baby. And this planning will have to coincide with me planning on when my ovaries will be removed too. As things stand in Scotland and the NHS, because I already have Emma, I would not qualify to have PGD and IVF on the NHS and have to go private. This is an incredibly big decision and cost but I know when the time is right there is no limit to what I would pay. However, I will remain hopeful that this will change in the future as there are rumours that those with genetic mutations might be able to have IVF regardless of how many children they have.
Finding coping mechanisms to deal with the unknown about Emma’s BRCA status has been key to going forward. I still have terrible moments of Mum guilt about the possibility of passing it on to her. However, thinking about it more I realised I would never go back and change it if I could. Just like me, this is potentially a part of us and has been from the VERY beginning. To change the mutation would change the person. I would not change Emma for anything. She is perfect the way she is, as am I. I wouldn’t be me if I didn’t have the mutation. It is LITERALLY in my DNA. If Emma falls into the wrong side of the 50% then she will choose the path that is right for her and I will support her through every step.
Thank you, so much Lisa. I think I speak for all when I say – Emma is lucky to have a BRCA Mum like you. If you have had similar experiences to Lisa, or want to ask any questions – comment below.
