Derry mum describes how 'cystic fibrosis doesn't get a day off' as infant daughter faces 'relentless' treatment burden

A Derry mum has spoken of the difficulties she and her infant daughter face due to cystic fibrosis to raise awareness of the life-limiting condition.

Laya Barr, whose 11-month old daughter Robyn was diagnosed with cystic fibrosis when she was just two weeks old, described the myriad of medications her daughter needs, her difficulties posed by damp-ridden housing, and the problems posed by long and frequent journeys up and down the road to Belfast for hospital treatment.

She was speaking to Belfast Live as the Cystic Fibrosis Trust launched its 'No Day Off From CF' report on what it describes as the "relentless treatment burden" faced by people with the genetic condition.

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"There is a new movement at the minute for Cytic Fibrosis titled 'CF never gets a day off' and it is 100%," she said.

"Even on holidays, it's still a full-time schedule. Have you ever heard the expression 'you don't know what happens behind closed doors'? Well, having cystic fibrosis is constant medications, nebulisers and physiotherapy."

The 'No day off from CF' report, published by the charitable Cystic Fibrosis Trust earlier this month, found that n order to stay well, people with cystic fibrosis face "a relentless treatment burden, from taking up to 150 tablets every day, monthly hospital check-ups to following special high-calorie diets and daily exercise and respiratory physiotherapy."

The report adds: "This is alongside any hospital admissions or routine appointments. Failure to maintain this rigorous daily routine can lead to serious health declines."

Laya, speaking to Belfast Live, said: "When Robyn got diagnosed I turned into her very own mini nurse. So Robin was diagnosed at two weeks, and it was actually found out through her heel prick [a blood spot screening test offered by the NHS to all newborn babies that can detect a series of nine rare but serious conditions, including cystic fibrosis].

"Whenever we had Robin, she obviously had a lot of issues gaining weight and nothing was staying in her system. There was obviously something was wrong and nobody could pinpoint what it was."

Laya explained that she discovered, through a phone call from medics in Belfast, Robyn had been diagnosed with cystic fibrosis.

"Belfast was straight on the ball with us," she said. "We went up and met them and they started Robyn actually on a thing called creon, which is enzymes. She started that because her pancreas doesn't work - it just struggles to work itself. So she's on Creon, which is the medication they help her pull like fats and stuff from the milk she was taking.

"Also, we just get sat down and it was explained to us 'this is what cystic fibrosis is, but don't be worrying because there's a lot more things out there now for cystic fibrosis that is going to give Robyn a sense of a good life and a lot of help'."

Robyn was given a range of medications and was "doing really well for a while", Laya said, but has since suffered from a series of bacterial pseudomonas infections that necessitated frequent hospital stays for little Robyn.

Laya said damp in the family home "made matters worse" for her little girl.

"The house was covered in rising damp," she explained. "I had complained numerous times about it and I got handed a humidifier. The consultants had actually wrote to say 'this house is going to kill this child'. She was contracting pseudomonas. Pseudomonas is caused from moisture in the air.

"So the likes of sand pits, Robyn wouldn't be allowed - essentially because it's just a breeding ground for bacteria. The likes of hot tubs would have the bacteria.

"She can't go to, like, Tropical World [a small zoo in Letterkenny in Co Donegal with a popular butterfly house] because the environment is damp when she walks in there. It goes into her lungs and for the bacteria it's like 'look at this big line of sticky mucus that we could just stick to'.

"And that's the issue with the cystic fibrosis. Now, when we were doing her nebulisers, we actually had to leave the house to go do it in [Robyn's father] David's house or my mommy's house because of the air because if we were doing the nebulizer in that house it was just pulling on what was on the air and that was just going straight back into her lungs."

Laya has now moved into a new home in Creggan with her two children and partner David, something she attributes to assistance from her local MLA Mark H Durkan.

But the pseudomonas infections have become "chronic" and Robyn has now spent the past several weeks in the Royal Hospital for Sick Children in Belfast. Laya and David are splitting the overnight stays in Belfast with Robyn between them. David, who works in a bar, has had to make specific arrangements with his employers to allow him to look after his little girl in Belfast.

Laya said things have not been easy for her older daughter, Phoebe, who has been forced to adapt to her parents' long hospital stays in Belfast.

"The first time Robyn came up, I stayed up there," she said. "Obviously it was hard because it was away from Phoebe. And then the second time we came up, David and me were going to swap but what happened was David had took sick.

"I did the full two weeks up here and we realized very, very soon that it was very hard on Phoebe. She sort of ended up getting a bit annoyed. She was just really off. Obviously, she had lost her mommy and her little sister Robyn somewhere up in Belfast.

"Like, it's a lot for Phoebe. I always feel really bad because Phoebe had me to herself for a full two years and just after Robyn was born, it was constant up-and-down to Belfast for appointments - then we were staying in hospital."

She said the pair made a plan to split the time in Belfast between them, and expressed her thanks to David's employers who have been "fantastic".

"Anything to do with the girls, they're on board and they're like 'no bother'," she said. "They work around him".

The financial strain of the long hospital stays has also placed a burden on the family.

"It's not cheap being up here because you're feeding yourself and then you're doing transport up and down," she said. "I just have to sort of budget money out for a rainy day because I don't know, like we could actually get a phone call that we this time just got a phone call to say like you are up."

And in the middle of it all, little Robyn has to endure the extensive medications and treatments to stay as healthy as possible.

In a Facebook post, Laya made a list of the medications Robyn is on. The list is as follows:

  • Paravit CF (vitamins) ; once Daily

  • - Sodium (her wee body doesnt make salt) up to 2 times a day

  • - Creon (2 capsules per feed) - Enezymes as her pancreas doesnt work correctly ; While in belfast we have changed to pancrex which is the same as creon except it is dissolved and easier to go down Robyns feeding tube

  • - Infatrini Peptisorb (Specialised milk , helps with Weight Gain) ; 4 times a day through feeding tube , if needed we can add in an extra 80ml

  • - Carobel 2 scoops per feed

  • - Omprehazole - 2x daily to protect her stomach

  • - Physiotherapy 2 times a day, if her wee chest is bad 3x times a day, we do prepcussion & vibration therapy morning and on a exercise ball with a pep mask afternoon

  • - Neubilisers- 4 times a day , Dornase Alpha (1 hr before physio morning) , colomisizing (an antibotic neubiliser took twice for after physio), Mucoclear (10 mins before afternoon physio).

  • - the the added antibotics that Robyn may be on for 14 days , 3 months or long term which be added in."

She added: "In hosiptal she is on IV antibotics and a few other medications to help try clear the pseudomonas, along with suction after physio to help clear her chest and help with weight gain (something Robyn has struggled massivly with)."

Expressing thanks for the work of medics in Belfast, she said: "The CF Team in belfast is unbelieveable and we 100% would be lost without them. We are very blessed to have such a great team working with Robyn ensuring she is always getting the correct help."

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