Friday 23 February 2018

'It was frantic and horrifically terrifying' - mum opens up about life with son who lives with cystic fibrosis

Gemma Dardis was devastated when she learned that her newborn son, Alfie, had cystic fibrosis. But, she tells our reporter, the care her little boy, now five, gets in the children's hospital in Crumlin is second to none

Gemma Dardis with her son, Alfie (5). Photo: Steve Humphreys
Gemma Dardis with her son, Alfie (5). Photo: Steve Humphreys

Joy Orpen

When Gemma Dardis gave birth to Alfie, her second child, she was somewhat apprehensive. But that was to be expected, given that he was already two weeks overdue, and Gemma's first baby, Lara, had spent a night in ICU following her delivery.

So, before she went into labour in the National Maternity Hospital, Holles Street, Londoner Gemma, who works in marketing, asked that a paediatrician check the baby immediately after birth. She also made it clear that she planned to breastfeed straight away, as part of the bonding process. However, things didn't go according to plan. Once little Alfie had been delivered, the midwife, having noticed that the baby's stomach was distended, discouraged all feeding, before whisking him off for a thorough examination.

Shortly after, the Dardis' lives began to fall apart. "They told us they had detected a hole and a blockage in the baby's intestines," says Gemma. "They didn't know what was causing the problem, but they said it was serious, and would have to be rectified surgically. Thank god that midwife was on the ball. If I'd fed the baby, it would have been much more problematic." Even though it was the middle of the night, Alfie was rushed to Our Lady's Children's Hospital Crumlin. "It was shocking," says Gemma. "We didn't even know where Crumlin was, because we'd only moved from London to Dublin in 2004."

Gemma had to remain in Holles Street, while she recovered from the effects of the epidural. So her husband, Conor, went with the infant to Crumlin. However, a little while later, Gemma was summoned to the children's hospital so that the risks facing Alfie could be explained to both parents. There were also consent forms to be signed.

Having been born around midnight on Saturday, Alfie was already on the operating table at 6.30 on Sunday morning. "They had to open him up, take out his intestines, cut out the blockage, and get rid of the dead tissue before stitching him up again," explains Gemma. "It was frantic, and horrifically terrifying. The surgery lasted four or five hours."

She says any handling of the bowel causes it to shut down for days. "So, there was nothing to be done but sit and wait for the body to start working again," she says. Eventually, Alfie was moved to the high-dependency unit, and only after a month was he able to go home. During his stay in Crumlin, genetic testing was done.

Five weeks after his birth, Alfie and Gemma were due to go to Holles Street for a routine post-natal check-up. But as their appointment drew near, they learned that they were to go to Crumlin instead, to see Professor Paul McNally. "I looked him up and saw he was a specialist in paediatric cystic fibrosis (CF) care," explains Gemma. "So I knew exactly where we were heading."

When they arrived at the hospital, they were ushered into a private room, reserved specifically for their meeting. They learned that the earlier tests had diagnosed the blockage as meconium ileus, a bowel obstruction that is often the precursor to CF. And that was indeed so, in Alfie's case. "The genetic team asked if we had a history of CF," Gemma recalls. "My husband then remembered that a distant cousin of his had the condition."

Further testing revealed that both Gemma and Conor were CF carriers, although their then four-year old daughter, Lara, tested negative for the disease. Whether or not she is a carrier will only be revealed when she is 16, if she chooses to know. "The parents are not given that information," Gemma explains, while adding that she, Conor and Alfie were also screened to identify specific mutations in the gene that causes the disease, so that appropriate medicine could be given to Alfie.

According to Prof McNally, "CF is a lifelong genetically inherited disease that currently has no cure. CF mainly affects the lungs and digestive system. It causes secretions in the lungs and gut to be unusually sticky and acidic, causing difficulty breathing, repeated infections and malnutrition. Children with CF have to take tablets with every meal, do breathing exercises, and have physiotherapy daily."

Gemma says the diagnosis was mind-blowing. "Your lovely coffee mornings and happy times with your baby are transformed into hospital visits, being taught to do physiotherapy, and learning all about medication and dietary requirements. I like to be well-informed, so it was very scary stuff," she says. "When you tell people that your child has CF, they invariably tell you they know someone with CF who died."

From day one, Alfie needed oral medication. And when he was just six months old, he began having physio and benefiting from a nebuliser (it converts liquid medication into a mist that can be breathed in through a mask). Currently, he has preventative physio twice a day, which involves him breathing and blowing, to strengthen and clear his lungs of excessive mucus secretions. He is also given enzymes every time he eats, to replace the ones that are lost when the ducts in his pancreas, (which produces enzymes) become blocked by mucus.

Thanks to early intervention and excellent ongoing medical care, Alfie is, according to his mother, reasonably healthy. "But a chest infection which you'd hardly even notice, can land him in hospital for 10 days, in an isolation room for protection from infection. That's very hard for a five-year-old," Gemma says.

What is good news, is that so far, Alfie has not suffered scarring to his lungs or other organs. And there is hope, that soon Orkambi, a drug that has helped many CF patients, will be made available to children under 12.

Gemma says her son is a good candidate for the medication. "I'm very hopeful," she says.

All of that means that Alfie, who is as bright and as cute as any five-year-old can be, leads a relatively untroubled life in their home of 14 years, in Stepaside.

He goes to creche, loves video games, playing sport, and is the apple of his mother's eye.

In the meantime, she has nothing but praise for the care Alfie gets at Crumlin. "We're so lucky," Gemma says. "He has a team which includes a specialist CF nurse, a dietician, a physiotherapist, a social worker and a psychologist. To have a team like that, just a phone call away, is unbelievable."

And that is why Gemma is absolutely behind the Small Victories Every Day campaign, which is being run to raise vital funding for CMRF Crumlin, the fundraising body for Our Lady's Children's Hospital Crumlin and the National Children's Research Centre.

Visit cmrf.org to donate, or Lo-call: (1890) 507-508

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