A mother who lost three
babies to a rare disease is sharing her story in the hope it will help others, Sue Doherty writes..
Catherine Flanagan from Ballybofey, now 50, lost three babies toWegener's Granulomatosis (WG), a condition so rare that there is no support group in Ireland. She has written a book about her experiences and also wants to make contact with other families affected by WG, to help them know they are not alone and offer each other support.
Catherine was 21 and living in London when she gave birth to her first child, Siobhán, (pictured) in 1986.
“Siobhán was a very healthy baby,” Catherine recalls. “She thrived and was even a bit greedy with her feeds. That’s how I first started to know something was wrong. After her Christening, she wouldn’t take her food.”
Catherine brought Siobhán to the doctor but was told everything was fine and that she was just being a nervous, first-time mother.
“Then one morning, I woke up and Siobhán was coughing up blood. She turned blue and we brought her by ambulance to Hammersmith hospital.”
They were there for a week, with Siobhán being fed through tubes but there was no improvement. “They couldn’t work out what was wrong so they sent us to Great Ormond Street,” Catherine continues.
“She was in intensive care for two weeks then moved to another ward because they thought she was getting better but she wasn’t.”
It was six months before Siobhán was diagnosed with WG which causes inflammation of the blood vessels in the nose, sinuses, throat, lungs and kidneys.
It’s so rare, in fact, that Catherine says Siobhán’s case was the only one the doctors knew of at the time and there was no treatment plan.
As Siobhan’s condition continued to deteriorate, she couldn’t even take her bottle, was gasping for breath and coughing up a lot of blood.”
Tubes, tracheotomy, nothing worked, Siobhán couldn't eat, drink or speak and Catherine stayed with her in hospital around the clock. In November, doctors said there was nothing more they could do. Catherine brought her baby home and Siobhán died the next day, aged 15 months.
Catherine’s marriage broke down and she moved to Ballybofey to be near her parents, Mary and John. She met John Gallagher and they’ve been partners ever since. They were delighted when Catherine gave birth to Sinéad in August 1990.
Catherine had an emergency Caesarean two months early. The baby was small, just over 2lbs, but otherwise healthy and put on weight.
Soon, however, Sinéad was coughing up blood and diagnosed with WG. “I couldn't believe it was happening again,” Catherine said. No treatment worked and Sinéad passed away in Catherine's arms, aged two months.
In 1994, a son, John Patrick was born, also premature. His chances were slim and doctors said he was a prime candidate for WB. He only lived one day. “The years have gone by but to us it's as fresh as if it was yesterday,” Catherine said. “ I've written a book and am spreading the word, here and on Ocean FM, to remember my babies and to help any other family to known that they aren't alone. We're here if they need someone to talk to.”
If you want to contact Catherine for a copy of her book or to find out more about Wegener's, email firstname.lastname@example.org .