Monday 17 December 2018

Heartbroken parents had to endure the loss of their beautiful twin girls through cystic fibrosis

Tragically, Mary and Paul Houraghan have had to endure the loss of their beautiful twin girls. However, Mary tells Joy Orpen, even though it only lasted 18 months, Laura's double lung transplant was an absolute godsend.

Steve Humphries
Steve Humphries
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Soon after Mary and Paul Houraghan's twin daughters were born, at the Coombe Women & Infants University Hospital, Dublin, the parents were told to choose names, as the babies might need to be baptised in a hurry. That momentous event occurred in June 1982, and heralded the beginning of an often heartbreaking journey for all concerned.

"The labour lasted two days and then they were born 15 minutes apart," says Mary. "I was so exhausted, I never thought to question the nurses, who told me to pick names." Laura, who only weighed 1lb 8ozs, was whisked off to Our Lady's Children's Hospital, Crumlin, where, within hours, she had surgery for a blockage in her intestine. She had been diagnosed with cystic fibrosis (CF) which causes a build-up of sticky mucus in the lungs and digestive tract. Mary says there was no certainty the tiny infant would survive the surgery. Meanwhile, staff at the Coombe, having concluded that the twins were identical, then knew Sarah (4lb 12ozs) would also have CF. So she was sent to Crumlin as well. It was devastating for Mary, who found herself all alone. "Next day, I left the Coombe and went straight to Crumlin," she says.

Even though Sarah was discharged within months, tiny Laura remained in hospital for a year. However, once the twins were home in Blanchardstown, Mary and her late mother shared the care of these special babies. "My mother took Sarah, while I concentrated on Laura and our eldest daughter, Lesly Anne," she explains. "That meant both twins could get all the attention they needed until they were stronger. I am so grateful to my mother for that."

Apart from their breathing difficulties, the girls needed dietary supplements with every feed, as the sticky mucus caused by CF also hinders the pancreas from producing enzymes that are essential for the absorption of nutrients from food. "It's an exhausting battle to get a CF child to put on weight," says Mary. Nonetheless, dealing with the condition, became a normal, if time-consuming, part of everyday life. "They did what most children do," says Mary. "But I'd have to summon them inside for a 'thumping' ­- which is what we called their physio - which we had to do every day to clear their lungs. They also needed medication to deal with the mucus and constant infections."

Oddly enough, even though Laura was much tinier at birth, she experienced fewer health difficulties than her sister. "Sarah was the quiet one," says Mary. "But she was also a carefree, happy, lovable child. While Laura was more boisterous. She was adorable too; a real chatterbox."

When Sarah was 14, she was admitted to Crumlin with breathing problems. This used to happen about four or five times a year, so her parents weren't too concerned. "At 1am, we went home," explains Mary. "Three hours later, we got a call to say she had deteriorated, and they had moved her to ICU. And even though they threw every antibiotic they had at her, tragically, three weeks later, our little girl passed." At this point, tears course down Mary's face. She then checks herself, before resuming the conversation. "That's when Laura showed us just how strong she was," she says.

Mary says her younger daughter supported her inconsolable parents and older sister in a most magnificent way. "She had clearly decided she wasn't going to let CF get the better of her. So she learned to drive, and she enrolled at Griffith College to do journalism," Mary says. However, soon after, Laura's health also deteriorated, so she had to put her studies on hold. Meanwhile, she went on the waiting list for a double lung transplant, at the Freeman Hospital in Newcastle. "We were back and forth to the UK," says Mary. "Three times we were called, but it didn't work out, which was very disappointing."

By then, Laura had returned to college. Finally, at midnight on November 5, 2004, they got the go-ahead for the transplant. "We saw her in ICU the next day [after the transplant]," Mary recalls, "and I thought, 'She's made it yet again'. Five weeks later, she was already in the gym, and incredibly happy to be able to do things without getting breathless. She got a whole new lease of life. We had the best Christmas ever." Six months later, Laura graduated. "It was unbelievable watching this tiny little thing going up to get her diploma. I burst out crying. It was such a proud moment for all of us," Mary recalls. At the time, Laura dreamed of going to Colorado in the US. Mary and Paul were advised to let her go; "You can't stop the wind", they were told. So, Laura went, for a month, with a friend.

However, she became extremely ill, and ended up in hospital in Los Angeles. Her parents took the first flight they could, to be by her side. The only way Laura could come home was if she was airlifted while on a ventilator. "There were three medics on board," says Mary. "Even so, she went into cardiac arrest. I begged her to hang on, that we were nearly home; and she did. Once we landed, she was rushed to the Mater Hospital." By then Laura was perilously ill, and it seems that she was fully aware of that fact. "She wanted that ventilator gone," says Mary. "She kept pointing to it, even though she understood what would happen once it was removed." A week after that happened, she died, with her family surrounding her in their love.

Mary has no doubt, that even if it was short-lived, the transplant was a great success. "Laura got 18 months from it. She achieved her goals. She went from the sun to the snow. She partied without oxygen, and had loads of fun. It's not easy at all to let someone go. But to give life to someone else, however brief, is an absolutely amazing, unselfish gift."

Mary is also convinced that had her precious girls been born in more recent times, they would have had a far better chance of coping with the illness. "The treatments and drugs have improved so much since Sarah and Laura were born in the 1980s," says Mary. "The future for children with CF is now much, much more positive."

And while Mary and Paul will never forget their wonderful twin girls, they get great joy from James (six) and Sean (four), Lesly Anne's children with her husband Ger Donnelly. "I'm so proud of her - she's had so much to cope with," concludes Mary.

To obtain an organ donor card, please contact the Irish Kidney Association, see ika.ie or text DONOR to 50050

Philip Watt, of CF Ireland, says the Government is advocating improving the organ donor consent system. That, he says, will make more organs available for transplantation

Sunday Independent

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