Antenatal Results and Choices (ARC) provides impartial information and support to families through prenatal testing and its consequences. Sadly, one consequence can be that parents face the painful prospect of ending their wanted pregnancy after a prenatal diagnosis of a genetic condition. ARC has provided specialised support to families in this situation for over 30 years. We know from our long experience that this is often a complicated and difficult loss. Fortunately for most couples, it will be an agony they only have to face once. However, for those who have or carry a genetic condition and want to avoid passing it on, it is a different story.
In Sara’s words: ‘Terminating a wanted pregnancy for medical reasons is already a “taboo within the taboo” of baby loss, but the genetic factor adds another layer of complexity. Once you are found to be a healthy carrier of a condition like mine, any future pregnancy will inevitably be filled with anxiety, fears, and uncertainty. It will mean attending specialist appointments, having your blood drawn multiple times, and being scanned almost weekly by a team of experts. Most importantly, though, it will mean always being fully prepared to face, once again, the trauma of letting your baby go, like we did with Luca.’
Whenever someone asks me if I would like to have more children, my heart races because the truth is that yes, I’d love to, but then I suddenly remember that our situation is very different, very complicated, very rare. So I sigh, force myself to smile, and remind the person that for us, pregnancy is never going to be easy and I’m not sure we will ever be ready to face all of that again.’
Breaking the isolation
Pregnancy and baby loss can be a very isolating experience. Many who carry a genetic condition can feel especially lonely as knowing they may have to terminate a pregnancy, they often avoid sharing their circumstances with others, fearing judgement. This was the case for a woman we supported:
‘I feel that the general public have very little idea of the things that can go wrong in pregnancy. I had a constant stream of questions from people as soon as we got married: ‘When are you going to have a baby?’, ‘You’re not drinking, are you pregnant?’ I hadn’t told anyone about my genetic condition so it was very painful to be questioned like this. When I did eventually tell people that we were ‘having some problems’, they immediately assumed it was a fertility issue. I didn’t want to tell people the truth as I thought I could be judged for having an abortion and I felt that I couldn’t handle any judgement. I think it would be helpful for people to know more about genetic conditions and how they can be passed on and how life changing that can be. I think it will also help if people thought twice before asking someone when they are going to have a baby.’
Breaking this isolation is one of the main aims of ARC’s bereavement support services. One of the ways we try to do this is by putting women and couples in touch with others who have shared similar circumstances through our online password protected forums We also train volunteers to offer peer support to others.
‘I felt very alone during facing three pregnancies with uncertain outcomes. I had two terminations which, although, I felt very sure I was doing the right thing, I wanted reassurance and to hear from someone else who had done the same thing as me. Speaking to a lady who had had a similar experience to me and had come through the other side ok really helped me a lot.’
Pregnancy will always be a fraught journey for couples who carry genetic conditions. The harsh reality is that facing the prospect of potential loss is the only way they can fulfil their dream of having a family. ARC will continue to work with anxious expectant and bereaved parents and raise awareness so they have the support they need to meet the inevitable challenges. The last word goes to one of our ARC volunteers:
I have a genetic condition that had a 50% chance of being passed on. It was passed on twice. This was heart-breaking but my dream of having my own baby spurred me on. Now, because I have a wonderful little girl I look back at what happened and think she would not exist as she is – and I think she is perfect – if what had happened had not happened.
One thing that got me through the hard times was thinking that one day I will be able to help someone else.
For information and support visit: arc-uk.org