Children

Regardless of which partner has a BRCA+ mutation, a naturally conceived child will have a 50% chance of inheriting it.

For those who are BRCA (or other gene) positive, this means that starting a family may come with greater considerations and consequences, especially for their daughters.

If both parents carry a BRCA2 mutation, there is a risk of your child having Fanconi Anemia.

Fanconi Anemia is a rare inherited disorder that can affect children. Children with FA have bone marrow that doesn’t produce enough blood cells. Several genes have been associated with FA, including the BRCA2 gene. A child must inherit two abnormal BRCA2 mutations—one from each parent—to develop FA.

There are options for BRCA+ carriers when it comes to starting a family. Currently in the UK, BRCA+ positive parents are offered access to various family planning options which they may wish to explore. We go into this a bit more below.

PGD is a technique used within IVF when one or both parents carry a genetic mutation. Tests are performed on embryos created outside the body to determine whether they carry a genetic mutation (in this case BRCA and other mutations relating to increased risk of cancer).

Only unaffected embryos will be transferred to the uterus. The average success rate for this type of IVF is around 33% (Guy’s and St Thomas).

It is worth noting that if you already have a child, IVF may not be offered on the NHS, but speak to your genetics team to find out what options you do have.

Check out this blog to hear about an IVF and PGD journey.

Many BRCA+ Mutants don’t go down the IVF route, taking the 50/50 chance – this is completely fine. There is hope for the future with cancer research and the development of new operations to support those with BRCA+ mutations. Some might feel guilty about passing on a genetic mutation to their children, but remember, there are options for people with BRCA+ and they can live a wonderful, happy and inspired life.

Read our co-founder Lisa’s blog about how she feels 5 years on here

You may have found out about your BRCA+ mutation after you’ve already had kids and started your family, and this can add a whole heap of emotions on top of what is an already emotional journey.

These can be very complicated emotions to get through and also include some complex and emotional conversations to have with your kids.

Let’s get into it.

Stats and when?

If either parent has a mutation, your children will have a 50% chance of inheriting it. But it is important to remember that they won’t be able to test until they are 18 years old, and if that is what they chose to do.

Why 18 years old?

Testing isn’t available until 18 years of age because it is a personal choice to find out about a mutation. Some people decide not to test and find out about their BRCA+ status for personal reasons, and this is a valid choice even if you don’t understand why.

Because of this, you have to be an adult to decide to find out about your BRCA+ status, as this could have a considerable effect on your life.

Having these conversations can be daunting and emotional, so be kind to yourself as well.

Whether you are talking about your upcoming surgeries or their risk of inheriting a mutation, make sure your conversations are age appropriate. Think about how much information and detail they need to know for their age, and their understanding of the situation.

Depending on the age of your child, books can be a really useful tool to explain surgeries, if you have to go into hospital and for recovery. Having a visual aid for them can set expectations and facilitate them asking any questions and expressing any feelings.

Here are some book recommendations from our community:

– Mommy’s Going to The Hospital

– Why is Mommy Having Surgery? She Looks OK to Me

St Georges Hospital also have this useful resource.

We know these conversations can be super scary, and that you will want to get it right in order to inform and support your child. Just remember that no one knows child better than you. Trust yourself to know how much to tell and when is the right time. Most children will want to help and support you (within limits of their age) and keeping your journey completely hidden from them stops them feeling involved. Children are more resilient than we know. Including them in your journey will allow them to care for you, but also show them your strength. If they have to go through the same journey, they will have you as the BIGGEST support having witnessed you come through your journey too.

If cancer is a part of your journey, these can be extremely difficult conversations to have with your kids. There are many amazing resources on how to speak to your children about cancer and additional support you and your kids can access.

We have linked these below but here are some good pointers to start with:

• Manage your feelings before speaking to your children. You will be going through a rollercoaster of really strong emotions, having someone with you to have these conversations may help to relieve some of the emotional pressure when talking to your kids.

• Speak to your kids in a familiar and safe place. This will allow them to process the information, ask questions and express their emotions more freely. Think about the time you are speaking to them, perhaps just before bed isn’t the best as they may struggle to sleep and the conversation might feel rushed.

• If you can, and it is age appropriate, tell all of your kids together to avoid them feeling like they know more or less than their siblings. They may also question why they were told last.

• Remember you don’t have to give all of the information at once. This may be overwhelming for everyone involved. Don’t overcomplicate the information you are giving and answer any questions as honestly as you can.

Here are some more resources to help with conversations about cancer:

– Maggie’s

– Macmillan

Guilt is a very common emotion to have on a BRCA+ journey, and we know how bad parental guilt can be. In fact, the guilt we feel and carry when living with a genetic mutation can, at times, feel worse than the mutation itself! 

It might be hard, but try and put yourself in your child’s shoes, or think about how you feel towards the parent who you inherited the mutation from. We wouldn’t want to put that guilt on our parent, just as your child wouldn’t want you to bear that guilt.  

Parental guilt will never fully go away, but in those moments be kind to yourself. You don’t want your child to have to manage your parental guilt as well as their own health. Try and find the silver linings if you can, when we find out about our mutation, we are empowering ourselves and our children to have the knowledge to act on it.  

It is important to remember that all children are different. Whether that’s a difference in how sensitive they are, if they like to know facts and information, or if they have differences in the way they understand and process information.  

I know we have said it before but no one knows your child as well as you. Trust in yourself that you will know how to navigate conversations about your mutation, their risk of inheriting the mutation, surgeries and the rollercoaster of emotions that come with it all.  

Enough from us!  

Here are some great blogs written by members of our community about Children and BRCA+

If you would like to write us a blog about your experience of family planning, having children or being a child growing up with BRCA+, we would love to hear from you. Contact us here.