Brca2 gene in my unborn baby girl

How do I even start this. I am 35. I am currently 4 months pregnant with my first child who is a wonderful girl. I found out her father has the brca2 gene. I decided to have the amniocentesis to ensure she wasn’t a carrier. A couple of days ago I was told my baby girl tested positive for the gene. I’m absolutely devastated as I want her so badly. I know the risks and I am aware of the preventive surgeries. I do not wish to sound insensitive I would just like a different perspective. I am struggling with the decision to terminate. I know she may have a wonderful life but I feel knowing her fate it would be cruel to keep her. I suppose there is a huge difference with not knowing the results and actually knowing. There are no guarantees she will develop cancer but there are hard times ahead if she wishes to have children in her future without the gene. The surgeries will be difficult for her to undergo and mentally the impact this would have. Any advice from a first hand perspective would be greatly appreciated as I’m completely new to this and I’m truly struggling

  • This must be the hardest decision you have to make. I didn’t even know they could detect it so early. 
    you need to speak to other people going through this . She may not develop cancer and by the time she is older they will have done something to stop it spreading I would hope. I’m brca1 now terminal and my daughter aged 12 is worried about it but I didn’t know I had the gene when I had her. Do lots of research before you decide anything . Good luck xxx

  • Hi SupportNeeded

    I can't even imagine what you're going through. I'm not a mother, it just hasn't happened for me and I've made my peace with that. Hopefully someone in your position can share their journey with you and help.

    All I can say is the worry of passing on the gene has always been in the back of my head, should I have ever started a family. However it's a 50/50 chance of passing it on, most parents who know they have the gene often aren't able to check with their children until that child becomes an adult and can make a decision themselves to be tested.

    What's important to remember and what I've always felt about my BRCA2 mutation is that to be fore-warned is to be fore-armed.

    Having the gene does not mean your child will 100% get cancer. either as an infant or an adult. it will not curtail their life in any physical or cognitive way. It means their risks of cancer in their lifetimes is potentially higher than the avg. member of the population without it yes, but it is not guaranteed.

    Also medical procedures, drugs and cancer trials are progressing in ways we can't even imagine. The chances are high that by the time your unborn child is an adult most if not all Cancers will be Chronic conditions that can be managed long term and even if they can't be cured 100% they can be sent into retreat and mean most patients will still live a long and rich life.

    Plus we already have all these screening programs, preventative procedures and preventative surgeries that mean knowing you have a mututation can mean you can take precautions. We can be checked more frequently than the avg. member of the population without the mutation.

    Cancer is a scary word I know, but often if cancer is caught early enough and treated successfully they never return. It is not a death sentence.

    I hope something I've said helps, make sure you seek advice, but also ultimately make the right decision for you.

    Love and Light xxx

  • I’d like to thank you for taking the time to reply to my post. Your words are heartfelt and exactly what I needed to hear. I will try and look at this from your perspective. I’m struggling to make a decision as you are right, there are so many advances in modern medicine and there are surgeries she could undergo. Knowing she has the gene before she is even born is the most heartbreaking but also will allow her the opportunity to take steps that others don’t get the chance to take. As like you said I can’t go into the future and ask her what she would like. My only worry is the struggles she will go through to make those decisions for herself. If children are in her future will she ever forgive me for having made it that much harder for her. Life is precious and I want to give her a chance to live it. I worry she will have to make tough decisions that will be too difficult for her to go through. I’m just not sure if I’m being selfish to want to keep her knowing what she will have to go through compared to others. Thank you for your perspective I will always be grateful x

  • Bless you, you are not being selfish. You were a mother in the truest sense of of word the minute you discovered you were pregnant. Part of that is thinking about your child's future and giving them the best you can and also worrying about all the potential known and unknown dangers in life and the environment thar surrounds them. She has you and her father to guide her. There will be struggles ahead no doubt but together you'll get through them. 

    Seek advice, speak to a genetic Councillor, your GP and your family. Send your doubts and worries out on a few other forums. You are not alone xxx

  • Unfortunately the father isn’t and doesn’t want to be involved in her life. I appreciate your comment as that is what I am trying to do. I want to think about her rather than what I want as mother’s try and always put their children first. I have spoken to genetic councillors and they have given me so many different perspectives and different ways she could prevent in her future. I just want to make the right decision for her. Even if it’s the hardest thing I’ve ever had to do. Thank you 

  • I’m so sorry to hear about your situation there is a 50/50 chance your wonderful daughter may not have the gene. Unfortunately they don’t allow you to test at such a young age. Your daughter can have preventative surgery which will lower her chances of any health risks down the line and If you are aware of he gene you can have fetus tests such as amniocentesis. A thin needle into the amnio fluid to test the babies genetic make up. Mine came back brca2 positive. Something your daughter can do if she is positive. I can’t imagine what you are going through if you need anything I will be here to help and support you! I’m so sorry Disappointed I will go on fb and check the support group you have mentioned, thank you for taking the time to reply when you are going through so much yourself xxx  

  • My heart reaches out to you. My main message is that when your daughter reaches 30 - the age when testing may start - the advances in breast cancer treatment will be so much further on than where we are now. There may be much more targeted and less invasive treatments if needed. I feel that there are so many aspects to your question that a genetic counsellor might help you navigate everything?