TRICK OR TREAT?Mary Mullin with her son Tommie (5). Mary is holding a Halloween fundraiser for Temple Street Children’s Hospital, where Tommie’s Spina Bifida was finally diagnosed and treated.?Pic: Ray Ryan
Temple Street, Tommie and me
Mary Mullin discovered her child had Spina Bifida years after he was born
Halloween is approaching, and all over the country children are looking forward to costumes, toffee apples, monkey nuts and spooky stories. At least, most children are. For some, the simple pleasures of carefree childhood have been denied. Hospital beds, sterile uniforms, strange tubes and machines and harsh drugs are the norm. That world can be a frightening one, but it would doubtlessly be all the more frightening if it weren’t for places like Temple Street Children’s University Hospital.
One woman knows this all too well, and her child’s experience of Temple Street has moved her so much that she is now helping to raise funds to support the vital work done there.
On a Saturday evening in January 2009, Mary Mullin gave birth to a beautiful baby boy, her first child, in Galway. Little Tommie was a month early, but he seemed perfect, and a good size at 5lb 13oz. However, the next day, Mary – who lives just over the Mayo/Galway border in Dunmore and worked in Blacoe Jewellers in Claremorris – noticed a little mark on his back. “It was just a redness in the middle of his back, over his spine,” Mary explains.
Although the hospital thought it best to keep mum and baby in until the Monday, it was decided that Tommie didn’t need a scan. “It was nothing sinister as far as they were concerned,” Mary remembers, “so we went home.”
As the months went by, Mary and her partner, Alan, continued to monitor Tommie’s back. “As Tommie grew, the mark stretched with him. My own GP was very good, mapping it as it got bigger.
“Still, we felt at times that when we rubbed that area where the mark was it would cause him discomfort, so we went to Paediatrics in Galway. But they couldn’t really find anything.”
As the months turned into years, the red mark on Tommie’s back would repeatedly swell up and get infected, and Tommie’s temperature would soar. There were lots of hospital visits and plenty of scans – but still no medical confirmation of what was wrong, a situation that caused Tommie’s parents a huge amount of stress. “In the space of a couple of hours he could get a high temperature and be really unwell,” says Mary, sighing at the memory. “We were up and down to A&E in Galway. But they didn’t know what it was. Tommie was constantly on potent antibiotics to fight the infection … In one year alone, he had ten to 15 courses of antibiotics. It was very scary.”
Eventually, just after his third birthday, Tommie was referred to Our Lady’s Children’s Hospital Crumlin, where he was initially diagnosed with a sebaceous cyst – something quite superficial. He was taken to the operating theatre to have the cyst removed. However, moments before the surgery, while he was on the operating table under sedation, the medical team decided his condition was more complex. The surgery was cancelled.
An agonising four months later, yet another scan was taken. However, it once again proved inconclusive. “They didn’t really know what the problem was, so they sent the results of that scan onto Temple Street,” explains Mary.
“Tommie was initially referred to Dylan Murray in Plastics … He looked at the scan, and he knew straight away what it was. Tommy had Spina Bifida Occulta.”
While, luckily, this is one of the milder forms of Spina Bifida, it is also one of the hardest to detect. (Occulta means ‘hidden’ in Latin.)
“We were referred then and there, that very day, to [consultant paediatric neurosurgeon] Darach Crimmins,” says Mary, relief filling her voice as she relives the moment. “Usually when you hear ‘referral’, you think of going home and waiting on a letter you might get in a year’s time. But in this case, it was just great – we were only an hour waiting in the hospital before Darach Crimmins came down from neurology.
“He was brilliant. Tommie was very conscious of his back; he didn’t want to let doctors near his back at all. But without Tommie even realising that the doctor was examining his back – he was playing with him – he quickly had his shirt pulled up, had seen where the mark was and had looked at it.”
Mary and Alan were at last told exactly what was wrong with their son.
“[Mr Crimmins] was able to tell us that when Tommie’s spine was being formed in the womb, one part never fully detached from the skin, so he had a chord going from his outer skin on his back right into the spinal chord. He explained that the repeated infection that Tommie was suffering would eventually work its way into the spine, which would mean a serious risk of meningitis or paralysis.”
While the news was shocking and frightening, Mr Crimmins explained that he could operate, and that if the surgery was successful, Tommie’s ordeal would be over – he wouldn’t need any further care.
Mary and Alan were extremely relieved to finally get a diagnosis. “It was very daunting, but the doctor put us at ease. In one day in Temple Street, they had diagnosed what was wrong with our son after three-and-a-half years of not knowing.”
Tommie was operated on three weeks later, on July 16, 2012, and the operation was a success. The chord between Tommie’s outer skin and spinal chord was severed. “It was all done and dusted so quickly, which was great. It meant we didn’t have time to be worrying about the ‘what ifs’. The next day after Tommie’s surgery, he was bright as a button! It was so hard to believe! We had a follow-up check up six weeks later, and we haven’t had to go back. We’ve been so very, very lucky.” Tommie now enjoys life like any other five-year-old little boy. “He’s running and jumping around the place!” Mary laughs, her joy at his divilment obvious.
The care that Tommie received at Temple Street was so impressive, so reassuring and supportive, that Mary is now involved in helping to raise funds for the hospital.
“When we went up there – we were there for a week – we stayed in St Gabriel’s Ward. The facilities they had were just great for entertaining children while they’re away from home.
“Things like the playroom to take children’s minds off things. Those things made a huge difference to Tommie – and he was only there for a week. Other children are there for nine or ten months a year, and they’re the kinds of things that help them develop while they’re missing school. The playroom assistants are just fantastic. They work so hard. They give 120 percent.
“I’ll never forget the day when Tommie was gone down for surgery. I remember sitting around, waiting beside his bed on the ward. I said I’d do anything just so long as he’d be okay, you know? I said that if we got through it, I’d pay them back somehow. And this is how we do it – we do a bit of fundraising for them.”
A few months after Tommie’s life-changing surgery, Mary had already stuck to her word. In October 2012 she ran a children’s Halloween party as part of the Trick or Treat for Temple Street fundraising initiative, raising €650. Last year, Mary organised a Monster Bingo in Dunmore and raised €2,000.
Now, Mary is looking forward to holding another Halloween Monster Bingo. “It’s a family event, so young and old can go to it. It’ll be on Sunday, November 2, at 3pm in the sports centre in Dunmore,” she says, extending an invitation to anyone who might like to go.
As for Tommie? Well, he’s now firmly in the happy camp of kids who are giddily counting down the days to Halloween, his head doubtless full of dressing up, ghostly ghouls and grinning pumpkins. That real-life scary world of hospital rooms, white coats and scanning machines is now a thing of the past, thanks to Temple Street Children’s Hospital.
To find out more about Mary Mullin’s Halloween Monster Bingo fundraiser, contact her on 087 9331541. This year, the money raised from ‘Trick or Treat for Temple Street’ will help fund the building of a new neurology unit. If your family, business or school would like to help by hosting a Halloween party, visit www.templestreet.ie.