Mum shares what it means when your baby has cystic fibrosis

Sam Carrier talks to MadeForMums about caring for her little girl Daisy, who requires daily physio and medication

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All through her pregnancy and labour, everything seemed just fine for mum-to-be Sam Carrier. The scans were all good, and labour was just 45 minutes. But, soon after birth, the family received the devastating news that little Daisy had cystic fibrosis.

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Sam recalls the moment she was first told:

“I heard a knock on the door on 26 October 2016. It was a lady from Birmingham Children’s Hospital. She said she was here regarding Daisy’s heel prick test [newborn blood test that checks for 9 different health issues] and that she had tested positive for two strands of cystic fibrosis – one common and one rare.

“I can’t remember much of what she said after that. I was in floods of tears. I’d never heard of cystic fibrosis before – I just knew that the lady had told me it affected her lungs and digestive system.

“When you hear that, you start to worry your baby’s going to die. We were sent to the hospital the next day to start treatments, have a sweat test to confirm cystic fibrosis (even though they know she has it), and meet all the team that look after her and to learn what it all meant.”

Sam describes the weeks that followed as “complete turmoil”.

“The news was devastating. You go through a grieving process, which sounds weird but it’s like grieving for a life you thought you had.”

Living with cystic fibrosis

From the beginning, having cystic fibrosis has meant daily rounds of medication and physio for little Daisy.

Samantha shared a video on Facebook to raise awareness of what this involves – take a look.

“She has preventative antibiotics every day to prevent her catching certain bugs that can accelerate lung damage, she has salt replacement twice a day as she loses a lot in her sweat and she has two different types of multivitamins on a higher than normal dose,” says Sam.

“Alongside this, before she has a feed she has to have an enzyme to break down the fat in her food so she can gain weight. She has physiotherapy twice a day when she is well or 3 to 4 times when she has a cold or anything like that.

“It means if people have colds etc they can’t see her until they are better. If she catches a cold it takes her a while to get rid of it. It also means a two-week hospital stay if bacteria gets in her lungs.

“Her last cold lasted 7 weeks and meant she had to have even more medication. She can’t be near to other people with cystic fibrosis as they can pass different bacteria on to each other. So when we go to clinic they are all isolated.

“She gets weighed every two weeks to check she’s on the right path and we attend clinic and the hospital once a month where we have to see nurses, consultant, dietitian, physiotherapist, psychologist and a family support worker.”

At the moment, Sam avoids taking Daisy to mum and baby groups – mainly because of the worry mums will go along with sniffly children (winter colds and all that) who could, in turn, make Daisy gravely ill.

She says she will try and take her in Spring though – presumably when less of those nasty bugs are around.

What others should know

When we asked Sam what she really wants people to know about having a child who has cystic fibrosis, Sam said: 

“Life with cystic fibrosis can be hard. It’s a lifelong and life-limiting condition. However we are still just us. Daisy is no different to look at compared with any other baby. We don’t want sympathy, we just want to be treated like anyone else.”

Sam has had to give up work as no nursery is able to give Daisy the care she needs. “We are battling every day to keep her well, we don’t get a day off from it,” she says.

If your baby has cystic fibrosis

When it comes to dealing with a diagnosis like cystic fibrosis, Sam says: 

“Scream and shout! Get it all out. Talk to people and other mums and dads with children with cystic fibrosis. It’s a terrible condition but there is so much hope and amazing research going on.  

“Never Google cystic fibrosis – because you will only see the bad and a lot of it is out of date now anyway. And try not to let cystic fibrosis stop you enjoying those first months with your baby because when you look back you will regret it.

“They are still your beautiful baby – nothing has changed that. They will be just like any other child apart from the physio and medication: make the most of every second.”

The future

While there is currently no cure for cystic fibrosis, developments do happen. “There are some amazing breakthroughs over the last few years,” Sam says.

“They are so close to making cystic fibrosis a live-able condition but it needs funding so we are raising money for the Cystic Fibrosis Trust (take a look at Daisy’s justgiving page for more info).

As a final note, Sam reveals that Daisy’s diagnosis has “completely changed our life and outlook on things. It also makes you have a much bigger appreciation for life”.

We can imagine, Sam – and thank you (and Daisy) for sharing your story ?

Photos courtesy of Sam Carrier

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