The decision to have a baby is a huge one for any couple to undertake, and yet, the added layer of a genetic mutation which could potentially be inherited by your baby makes for an even more complex decision-making process.
For some couples, the decision to undergo genetic screening and IVF feels like the best option, while for many others, leaving things to nature feels more aligned to their own personal journey and circumstances.
Whatever route you chose to take, the journey to parenthood is an incredible one and the path you chose to get there is deeply personal. To support our community on this journey, we have developed a wide range of resources to help you make educated and informed decisions. Recognising however that personal stories are sometimes the most empowering, we’re sharing Jenna’s* experiences on why her and her partner have decided not to undergo IVF, and what hopes they have for their future family.
How old were you when you discovered you carried a genetic mutation?
At 18 years old, I discovered I carried the BRCA2 genetic mutation increasing both my risk of breast and ovarian cancer.
Since that time, how has this influenced or shaped your decision to become a mother?
I always knew that there would be something extra for me to consider with my partner when the time came to start a family. I was / we were committed to making sure we both understood all of the various options available to us, even if we already had an idea of the path we wanted to follow. Education is key. My partner is very much in the same headspace as me.
We have been together for a few years now, and I was pretty open from the start regarding my high-risk status. It’s not something that I have ever really hidden, I am comfortable discussing it. My partner has always said that he feels comfortable because he can see that I actively manage it – I have regular appointments with my healthcare team, I regularly attend Pink Hope information seminars, I’m very open about what this might mean for me and for us in the future. He can see that I’m doing what I can to manage my risk and that gives him comfort – and if something bad does happen, we will cross that bridge when we come to it.
Another, albeit slightly lesser, impact of knowing my high-risk status for me is that it makes me feel like I have less time to have my family before the recommended timeframe for preventative surgery kicks in.
I have very clear timeframes in my head – somewhat ironically, given that life hasn’t always played out according to my timeframes in other areas of my life! I know nothing is a given and there are so many aspects to starting a family that you can’t really control, but I’m now at a stage where I’m not comfortable leaving it any longer to have my children before that looming ‘deadline’ arrives.
When did you explore the IVF path – what did you learn along the way – both about the process and about yourself?
We decided to undergo general pre-pregnancy carrier screening – we both found this to be a really positive experience! As part of this, you undergo a few interviews with a genetics counsellor. We discussed with her all of the options available for eliminating a BRCA gene fault from our children. She was able to answer all of our questions, it was really insightful! IVF and pre-implantation genetic diagnosis were one of the potential options we discussed.
We learnt that there are multiple options available for couples looking to eliminate BRCA gene faults in their children, and that ultimately it comes down to personal choice. As do so many aspects of being high-risk! Our genetics counsellor emphasised the importance of discussing all possibilities and outcomes as a couple now, to make sure that we are both on the same page before establishing a pregnancy.
My partner and I did this and discovered that we are both very much on the same page. I understand and respect that every situation is very personal and very different, and that what is right for one couple will not necessarily be right for another. And that is perfectly okay.
For us, we have decided that unless we need IVF assistance to establish a pregnancy, we are comfortable to proceed with attempting natural conception. If this doesn’t work and we do need to go down the IVF path to achieve a pregnancy, then we will consider undergoing PGD as part of this.
Why did you decide to attempt to fall pregnant naturally, rather than follow the IVF path?
Ultimately, I feel like my life has been manageable as a BRCA gene mutation carrier. So far – touch wood! – I don’t feel like my high-risk status has adversely affected the quality of my life. My partner and I have hope for the future, and for our children, because science and medical advancements are only getting better. There is every chance that should our future children inherit this faulty gene, they will have so many more options available to them to help navigate it.
What are your hopes for your future and for that of your future children?
As above, we have so much hope for the future! Looking back, the differences between my mother’s experience and my own have been dramatic. Imagine that leap again for our future children? We have seen continual breakthroughs even in the last decade – improvements in more personalised genetic screening and understanding of risk, developments in preventative and reconstructive surgeries.
In particular, I hope for breakthroughs in ovarian screening and cancer prevention management. We definitely have hope that science will continue to evolve to improve the lives of the high-risk community both now and for future generations.
*Name changed for privacy reasons
This article was sponsored by Astra Zeneca and developed independently by the team at Pink Hope in consultation with medical experts.