Newborn diagnosis

Dhyuti playing with her family

Newborn diagnosis

If your baby has just been diagnosed with CF, you might not know where to start. We've pulled together some information to help make things easier.

Download the full guide

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

arlo and his mum and dad playing

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. 

  • 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.

    Read Natasha and Natalya's story

  • "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.

    Read Marta and Igor's story

  • "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.

    Read Laura's letter

  • "He's my little star": Sarah's diary

    Sarah, whose son Rhys has CF, kept a diary during the early days of his diagnosis. 

    Read Sarah's diary

Open Dhyuti's story | New Parents video

Dhyuti's story | New Parents

Open Nicole and Martyn talk about their reactions to Arlo's diagnosis | Your Baby's CF Diagnosis video

Nicole and Martyn talk about their reactions to Arlo's diagnosis | Your Baby's CF Diagnosis

Open Arlo's story | Your Baby's CF Diagnosis video

Arlo's story | Your Baby's CF Diagnosis

Open Nicole and Martyn discuss childcare and the Individual Healthcare Plan | Your Baby's CF Diagnosis video

Nicole and Martyn discuss childcare and the Individual Healthcare Plan | Your Baby's CF Diagnosis

Open Tilly interviews her parents about her CF diagnosis | Your Baby's CF Diagnosis video

Tilly interviews her parents about her CF diagnosis | Your Baby's CF Diagnosis

Open Nicole and Martyn discuss talking about CF to friends and family | Your Baby's CF Diagnosis video

Nicole and Martyn discuss talking about CF to friends and family | Your Baby's CF Diagnosis

Open Come with us to soft play | Your Baby's CF Diagnosis video

Come with us to soft play | Your Baby's CF Diagnosis

Open Shanique talks about the forum | Your Baby's CF Diagnosis video

Shanique talks about the forum | Your Baby's CF Diagnosis

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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.

woman at computer

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.

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