Newborn diagnosis
Congratulations on your new arrival, and welcome to Cystic Fibrosis Trust.
We understand that a diagnosis of cystic fibrosis (CF) can be difficult and often unexpected. You may feel overwhelmed at the information that’s being shared with you so early on in your child’s life. You might be thinking about what having CF will mean for your child, you, and your family as they grow up, and you’re sure to have lots of questions.
We are Cystic Fibrosis Trust, the only charity in the UK for people with cystic fibrosis. We help families give their child the best possible support every step of the way, and we’re here for you too. We’re working towards a brighter future for everyone with CF by funding cutting-edge research, driving up standards of care and supporting people with the condition and their loved ones every step of the way. We won’t stop until everyone with cystic fibrosis can live a life unlimited.
Cystic fibrosis (CF) is usually diagnosed in newborns with a routine blood test. This information is aimed at parents with a new baby, but sometimes people are diagnosed in later life. You can find our information on late diagnosis here.
Download the full pack: Cystic fibrosis diagnosis and your baby – A guide for families
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I've just found out my baby has cystic fibrosis
A diagnosis of cystic fibrosis (CF) can come as a shock, but however you're feeling, there's no right or wrong way to feel.
Read our guidance for parents whose baby has just been diagnosed
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Looking after a child with CF
The arrival of a new baby is a special time for you and your family. We're here to support you as you welcome your new addition.
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Looking after yourself
As a new parent to a baby with CF, it's important you look after yourself, too.
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Your baby's future
There's no reason why your baby shouldn't have a bright future.
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Talking about your child's CF
Talking to friends and family about your child’s CF is something many parents find challenging. However you choose to talk about CF, you can do it on your terms. We've put together a guide to help you through these conversations.
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Your questions, answered
A new diagnosis of cystic fibrosis (CF) brings lots of questions. Here, we’ve gathered some of the questions we see most often and provided some answers.
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Parents' top tips
We asked a group of parents of children with CF to share some of their top tips.
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Resources and support
Find out more information and where you can get support if you need it.
Take a look at our list of resources and support for new parents
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Sign up for our emails
Sign up to receive tailored emails about your baby's CF diagnosis and we’ll send information to support you throughout your baby’s first year, including signposting to information and practical support, services available from Cystic Fibrosis Trust, and tips and guidance from other families and CF professionals.
Download the full pack
We've put together a pack called Cystic fibrosis diagnosis and your baby – A guide for families, which is filled with helpful information to support you through these early days following diagnosis.
We are different but united. Each of us has our own story to tell.
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Juggling work and parenting a child with CF: Natasha and Natalya's story
“I want her to know that her condition will not hold her back from her dreams,” says Natasha, mum to Natalya, who has CF.
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"He is my little hero, the bravest child I know": Marta and Igor's story
Marta, mum to twins Igor and Wiktor, tells us about Igor's cystic fibrosis (CF) diagnosis – and how things have changed since then.
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"Life only gets better from here:" Laura's letter to her past self
Laura, whose son Jack, age one, has CF, describes her feelings about his diagnosis in a letter to her past self.
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"He's my little star": Sarah's diary
Sarah, whose son Rhys has CF, kept a diary during the early days of his diagnosis.
Published July 2024
Next review date: July 2027
You might also be interested in
How is CF diagnosed?
Find out more about cystic fibrosis (CF) diagnosis, including the processes of newborn screening, carrier testing and diagnosis in adulthood.
Family planning for carriers
If your child has been diagnosed with CF, you might be wondering what this means for future family planning.
Genetic testing for other members of your family
Genetic testing is available for family members of someone who has cystic fibrosis (CF), to find out if they are carriers of CF gene mutations.
Here to help
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.