29/12/2013 23:55 GMT | Updated 22/05/2015 10:12 BST

Cystic Fibrosis: Why I Had Three Children Knowing They Could Be Born With A Life Shortening Condition


Susan Rowan's 16-year-old son was just a few days old when he was diagnosed with a life shortening condition. "Connor's bowel was punctured during a fairly routine practice in hospital. It was when they were trying to fix the problem that tests showed he had cystic fibrosis," says Susan, who lives in Glasgow.

Susan and her husband, both just 18 years old, were stunned. "We went in expecting a perfectly normal baby, but before we knew it, they were talking about how Connor might well only live until he was 35. I felt numb, particularly when they told us it's a deteriorating condition and that most kids with it struggle to gain weight and need ongoing treatment forever."

Indeed, cystic fibrosis is a condition affecting around 10,000 people in the UK. People who have it usually look perfectly healthy, but it is a lifelong challenge that involves a vast daily cocktail of drugs, time-consuming physiotherapy and hospital visits.

Sure enough, Connor spent the first few months in and out of hospital, often for fortnightly stays. "For me as a mother, it was really hard to watch him being so unwell and being prodded and poked, as well as being asked the same questions over and over again," admits Susan.

"If he got a simple chest infection, he'd get really ill and he couldn't have antibiotics, but would need to be put on a drip instead."

No wonder that when Susan became pregnant again just nine months after Connor was born, she was offered the amniocentesis diagnostic test to find out if this baby had the genetic condition too. "I was warned there was a one in four chance and sure enough, the test came back saying that my unborn baby had it too."

The hospital warned Susan that coping with two children with the condition would be extremely difficult, as well as pointing out that people with cystic fibrosis are not supposed to be in each other's company due to risk of cross infection.

But Susan and her husband were in no doubt that they wanted to go ahead and have Stephanie, who was born 18 months after Connor.

"We wanted another baby very much and felt Connor was doing OK, despite the hospital visits. We did, however, make sure that they had separate bedrooms to minimise cross infection."

The hospital was right - Stephanie did need as much treatment, if not more, than Connor, meaning that there were weeks and even months when Susan felt she was rarely out of hospital.


Not surprisingly, some of Susan and her husband's family and friends were taken aback when, two years later, they decided to have a third child, Aiden.

"We didn't have the amniocentesis this time round," admits Susan. "We were a family of kids with cystic fibrosis by now and it's all we knew. In fact, to bring a child into the family that didn't have it would have felt stranger."

Susan admits she did face criticism once Aiden was born with the condition, including a friend who told her there was no way she should be bringing children into the world who were so sick. "But I didn't agree and I no longer talk to her. My kids hare happy and pretty healthy, all considered. And the cross infection thing doesn't seem to be a problem either. I think the kids have become immune to each other!"

In fact, it's been nine years since Connor has needed to go to hospital and doctors have recently suggested that he may live longer than 35 years old. Stephanie and Aiden are doing well too, says Susan.

Connor loves football and play stations, she explains, whilst Stephanie, 14, loves singing. "She'd love to go on the X Factor," laughs Susan. "As for Aiden, who's now 12, he'd be the next human Spiderman, given the choice. If you met them, you wouldn't even notice that there is anything wrong with them."

Susan, who split up from her husband in 2006 and now lives alone with the kids, admits that they never know the moment things might deteriorate and their health may be put at severe risk. "But for now, provided they get regular physiotherapy and I wrap them up warm in the winter and keep them out of damp, cold wet weather, they're OK.

"Surely those are the things any nurturing mum would do. We've learned to take each week as it comes and hope for the best."

She adds that the Cystic Fibrosis Trust has been a great support. "Any time I've needed advice, they've been brilliant and they are even giving us a grant to take the children on holiday next year."

Susan knows it is easy for others to judge her, even knowing a little about her situation and the choices she's made. "But when people hear the whole story, they realise I'm just a normal mum who loves her children."

Cystic fibrosis is the most common inherited disorder in the UK. It is a genetic condition in which the lungs and digestive system become clogged with thick sticky mucus.

Symptoms usually start in early childhood and include a persistent cough, recurring chest and lung infections and poor weight gain

Symptoms of cystic fibrosis usually become apparent in the first year of life. An early sign is that an affected child's sweat is unusually salty, which can be noticeable when you kiss your child.

Cystic fibrosis directly affects around 10,000 people in the UK. The faulty gene is carried by over two million people in the UK, most of whom have no idea. If two carriers have children, there's a one in four chance their child will have the condition.

There is no cure but life expectancy has increased dramatically in recent years with advances in managing the symptoms.

You can find out more at
or call the Cystic Fibrosis Trust's helpline 0300 373 1000