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.
Most parents will find out their child has cystic fibrosis (CF) shortly after birth, after the routine heel prick test. If there is no history of CF in your family, the news can come as a shock.
The birth of a new baby brings with it a mixture of emotions, which can also be true for parents when they find out their child has CF – you may be feeling sad, worried or angry, or you might feel relieved that you now have a diagnosis if you’ve been worried about your baby’s health.
Everyone has their own response, and there’s no right or wrong way to feel.
Advice I would give to any new parent is: take one step at a time. One day at a time. The information you are given in the beginning can be so overwhelming and a lot to take in. The [CF] community is out there – reach out when you’re ready.
Holly, mum to Amelia, age 2
You may feel overwhelmed at the information that’s being shared with you so early on in your child’s life.
Or you may be thinking about what having CF will mean for your child and your family as they grow up.
However you’re feeling, you’re likely to have lots of questions.
When the doctor was telling us what cystic fibrosis is, I stopped her and asked what this word means in Polish, because I had only been in England for two years and the medical language was foreign to me. My midwife translated it for me and then it all started... I went to the kitchen hugging Igor and crying loudly. I asked myself: ‘Why?’
Marta, mum to Igor (who has CF) and Wiktor, both age 6
Every parent’s experience of being told their child has CF is different.
It might be tempting to look for information about cystic fibrosis online or on social media, but this can be misleading, out of date and may not be relevant to your child.
Use trusted sources like your CF team or Cystic Fibrosis Trust.
When I was sitting in the hospital, I was handed some info a nurse had printed out for me about CF and I remember reading a mother’s story. She said that she lost the first year of her child’s life because CF had consumed her. I remember being determined not to let that happen, and the sad thing is, I did. The first 18 months of my daughter’s life, I struggled, and I grieved. It’s my biggest regret. Try not to let this happen because you never get that time back.
Jade, mum to Penelope, age 7
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What is CF?
Cystic fibrosis is a genetic condition affecting more than 11,000 people in the UK. You are born with CF, and will have the condition all your life. You cannot catch it.
The function of the CF gene is to make a protein that controls the movement of salt and water in and out of the body’s cells. In someone with CF, this gene has a fault (also called a mutation or variant), and the protein is abnormal or not there at all. This fault causes the body to produce thick, sticky mucus that affects the lungs and digestive system.
How does CF affect the lungs?
We all have a small amount of mucus in our airways which helps keep them healthy and free of infection. In people with CF the mucus produced is thick and sticky. Over time, this makes people with CF more likely to get airway infections, which can lead to more mucus and inflammation in the lungs. Treatments are getting better at preventing this mucus build up and keeping the lungs healthy.
How does CF affect the digestive system?
Most people with CF cannot digest food very well as their pancreas does not produce digestive enzymes. This means that newborn babies with CF can fail to gain weight, even though they might be feeding well, and have more regular wet and dirty nappies. They can be unsettled until their digestive issues are in a treatment routine.
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How is CF diagnosed?
Newborn blood spot screening
In the UK, every baby is offered newborn blood spot screening, also known as the heel prick test. This usually happens when they’re around five days old. It involves taking a blood sample to find out if your baby has one of nine health conditions, including cystic fibrosis. As a result, CF is usually diagnosed shortly after birth, but sometimes a diagnosis can take longer. Whether your baby is well or showing signs of being unwell, when you get the diagnosis, it can come as a shock.
At first we were shocked as this was the first time we’d heard of the condition.
– Mithun, whose daughter Dhyuti, 8 months, has CF
Find out more about newborn blood spot screening
Antenatal testing
Sometimes CF is suspected before diagnosis. This might be before birth, through ultrasound scans during pregnancy, or shortly afterwards.
Your doctor might suspect your baby has CF if they have an intestinal or bowel obstruction (blockage) called meconium ileus (MI), or if your baby isn’t growing as expected (this is called ‘failure to thrive’).
Find out more about antenatal testing
Sweat test
If a baby is thought to have CF, a sweat test is usually done as part of the testing process.
The gene affected by CF controls the movement of salt and water in and out of cells. People with CF lose a large amount of salt in their sweat. The sweat test measures this.
It is done by collecting a small amount of sweat from the arm or leg. This is not painful.
The results are usually available quickly, and sometimes you will be given the sweat test results later the same day. If not, the person doing the test will let you know when the results will be available. Sometimes the test needs to be repeated if not enough sweat is collected.
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Finding out your baby has CF
You may have had a home visit from a CF healthcare professional or the news may have been shared with you at the hospital.
How you find out about your child’s CF can have a big impact on how you feel about the diagnosis. You might have found out quickly or had to wait. Diagnosis stories and experiences can all be different, but all can be similarly emotional, and your experience is something that’s likely to stay with you.
“The 20 week prenatal scan showed an echogenic bowel, so we were sent for genetic testing and were found to be carriers. Natalya was born with meconium ileus and the official diagnosis was given one week after Natalya was born, via a heel prick test.”
- Natasha, whose daughter Natalya, 3, has CF
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Published July 2024
Next review date: July 2027