Looking after yourself

If your new baby has an older sibling, you may find that this helps to normalise life. It is likely that your older child will still expect the same routine and attention. It can be hard for older siblings to deal with a new arrival, along with the additional attention that CF may bring. Encourage your other children to share their feelings with you and make sure they feel included in their new sibling’s life. You can watch our video CF: What’s it all about? together to help them understand their brother or sister’s condition.

They understand that their sister has a health condition and they look after her.

– Fajana, whose daughter Khadija, 14 months, has CF

I didn’t understand it at first, but I came to all the appointments with her, and ended up taking care of her together with my mother when it came to treatments. I was also being tested for it and carry the gene, so it was important for me to understand it too. She has achieved so much; she didn’t let it stop her from following her dream job, travelling, and now she is getting married. Having to watch her take all those tablets and trying to make a young girl understand why they were important was hard. But it also strengthened our bond because we have done it all together.

– Leah, whose sister Pia, 21, has CF

If you have any questions about genetic testing or how to support your children without CF, your CF team will be happy to help.

Remember that the people who care about you would like to offer you help and support. Ask them when you need help, not just for your baby but for you too – there will be other times when you can repay the favour. Cooking a meal, a chat over a coffee or taking your other children to school are all things that will help you and allow them to show you that they care.

Not everyone will have friends and family close by to rely on for support. It’s worth checking if there are any groups or charities in your local community who can be of help or looking into your Local Authority’s Local Offer or Children’s Services on your local council’s website.

We had fantastic support. Our parents and best friends, even now, are amazing. My husband isn’t a huge talker but every now and then, on those date nights, we talk together. I do get great comfort in talking to my mum and my best friend. They have witnessed our journey since day one and they understand me. Find your person or people.

– Jade, whose daughter Penelope, 7, has CF

Always ask family or friends for help – even if it is just to watch them for an hour, so you can get a bath, have some sleep and a break from the CF routine. Show them how to do things like give Creon® or do physio or nebs.

– Natasha, whose daughter Natalya, 3, has CF

Looking after a child with a medical condition can be exhausting and isolating, and if you are a single parent you might find there are extra challenges, but you are entitled to support and might be able to get financial help. 

Where parents are separated, it can really help for both parents, where possible, to be involved in the child's CF care. Some single parents have found it really valuable for a grandparent or other trusted friend/family member to understand what's involved in day-to-day care of a child with CF, so that they can step in and provide support if needed.

I didn’t return to work until Olivia went to school. This meant we spent lots of quality, one-on-one time together. When Olivia was younger we did physio twice a day and I think this physical contact strengthened our bond. We love to travel together, we have amazing times and we’re still very close.

I took my aunt to all Olivia’s CF appointments. It’s so useful to have someone else there to support you and help with the practical things like finding parking. We’ve always tried to make a day of it when we go to clinic – we’d have lunch out and Olivia would have a treat, like a sticker book. She never complained about going to her clinic appointments!

– Jane, single mum to Olivia, age 20

CF has meant I’ve spent more time with him and been at home with him. Now that he’s older, we go to the gym and concerts together – we’re so close.

– Lorraine, single mum to Aiden, age 13

Gingerbread is a charity that supports single parents.

Find out how Gingerbread might be able to help you

It can be challenging to juggle working with looking after a child with CF. Unlike other children, time will need to be spent on their treatments and care, including going to clinic appointments. Your CF team can support you to teach people like childminders and nursery staff who look after your child how to give some of the CF treatments. Some parents have told us that working flexibly can help you to manage this. You can find more information on how Cystic Fibrosis Trust can support you with employment at cysticfibrosis.org.uk/workforwards

Managing CF and treatments can be expensive. We can support you with applying for benefits, accessing grants and other ways you can ease the financial burden and increase your household income. Contact our Helpline for more information. You can also speak to your CF team about access to a CF social worker who can support you with this.

Share the baby’s CF condition with supervisors or colleagues. There might be cases when you will have to be off work for longer than expected. Setting the expectation at work will help.

– Mithun, whose daughter Dhyuti, 8 months, has CF

“It’s changed my whole career plan as I had to work part-time to be around for my son. I claim DLA and Carer’s Allowance. Money is a big worry for me.” Lorraine, single mum to Aiden, age 13

Finding childcare for your child while you work can be an exciting and daunting time for parents. We have information on how to make the transition as smooth as possible, including infection control, diet management and building your relationship with the childcare provider. Your CF team can also support with this.

Learn more about childcare and CF

Starting pre-school or primary school can be an exciting and daunting time for parents, particularly if your child has cystic fibrosis (CF). We've put together some guidance to help you with the transition.

Read our pre-school and primary school information