'We wanted to give parents a virtual hug'
A new book aims to support parents when a child gets a cystic fibrosis diagnosis, writes Geraldine Gittens
'My beautiful daughter Aibhín was born last October. Being my first child, I didn't think that her feeding and toilet habits were anything out of the ordinary - she drank a lot of milk and seemed to produce a lot of dirty nappies. But all that changed when I received a phone call from Tallaght Hospital, and I was asked to come back in with my daughter."
Kildare primary school teacher Eilís Moroney and her husband Ken Lyons were told when Aibhín was three weeks old that their little girl had cystic fibrosis (CF), a genetically inherited disease that primarily affects the lungs and the digestive system.
All newborns in Ireland are screened for eight conditions in their first week of life. A simple 'heel prick' test, where a small blood sample is taken from the baby's heel, screens for illnesses including cystic fibrosis.
"It was a big shock because we didn't expect it. Aibhín's birth was a huge celebration and we were scared and we didn't want any harm to come her way. But I look at [that day] as the day she got to live her best life, she got the enzymes, and all the support," Eilís says.
Aibhín has the most common mutation of cystic fibrosis, double delta F508, and because she is "pancreatic insufficient", Eilís explains, she needs to be given extra enzymes every day to break her foods down and help her absorb nutrients and good fats from her food.
"The day we got the news, the professor said: 'she has cystic fibrosis, it's now called a lifelong illness, it's not called a life-limiting illness; now is the time to have CF'."
Eilís explains: "There's no huge change to our family routines. The prognosis is good for the future.
"That weekend we got to go out for a walk as a family because Aibhín was feeling full [because she was prescribed enzymes for the first time]. Obviously we were processing the news but we started to see an immediate change."
Aibhín does physiotherapy each day with her parents, and every day she takes a multivitamin, enzymes and a salt solution, which doctors have prescribed.
"We do physiotherapy - bouncing on an exercise ball - twice a day, in the morning for 15 minutes, and in the evening for two minutes followed by a little bit of patting on her chest," says Eilís. "Then she does loads of tummy time, all the things you'd be encouraging your child to do. She's moving backwards everywhere now and so she's getting ready for the crawling, all the movement is really good for her.
"She loves the physiotherapy, she's a happy, smiley little baby. I see no reason why that would change."
Earlier this year, Eilís published a children's book, Our Baby has Sixty-Five Roses, with illustrator Ruth Cahill, whose son Harry was diagnosed with CF in 2009.
"Sixty-five roses" is how children often first say the words "cystic fibrosis", and for Eilís and Ruth, the book is about helping siblings and relatives better support the person with CF in their lives, while also giving comfort to parents at a very difficult and challenging time.
"I hope that our book will go some way to help remove the paralysing fear of a CF diagnosis for families and help people to see the bigger picture," Eilís explains. "Nobody should be defined by a medical condition that they may have.
"Hospitals are amazing and they're on top of the medications... I saw there was a need for a holistic approach for the CF families.
"I'm a primary school teacher and we always use stories as a stimulus for conversation and dealing with certain topics. I didn't feel there was anything on the market to help parents and families with the diagnosis of their child's cystic fibrosis. I was looking to explain to them in a non-frightening way what cystic fibrosis was. I have a niece and a nephew and I wanted to show them that a baby is a celebration and everything is going to be OK."
The words and pictures gently explain a day in the life of a baby with CF, and offer ways in which the entire family can get involved with physiotherapy and ensuring germ control through hand-washing, amongst other measures. Some 2,000 copies were printed, and the book was partly funded by CF Ireland. Orders have come from as far away as Ohio and Australia.
"There needs to be more books that highlight different things that kids have, I see that in the classroom as a teacher. We need more books with different skin colours, different family make ups, books that highlight different disabilities.
"The words are my story as a CF mum, and Ruth's pictures are her stories as a CF mum. It's so sweet. The colours we chose, the white background, we wanted it to be a gentle introduction to CF in your home.
"We wanted to give a virtual hug. When I went into Tallaght hospital, I felt like I was being given a virtual hug.
"It hasn't been an easy journey and I hope this book helps others to learn from our experience. I wrote this book for me. I don't think I'm any different to any parent out there, I want her to be healthy, happy, confident, and this just helped me to write it, and if ever I get worried about Aibhín, I take a look at the book and I'm reminded, 'hang on now, this lady has many beautiful gifts and talents'."
* Our Baby Has Sixty Five Roses is being sold through Amazon for €11.99, and is also available to order from Cystic Fibrosis Ireland; visit cfireland.ie
Health & Living