Early present: young children discharged in time for Christmas
Sophie Hendrick and her partner David Mahon with their baby daughter Gabriella, who was born 15 weeks prematurely. Picture: Moya Nolan
Two weeks ago, seven-month-old Luke Harty switched on the Christmas lights at CHI (Children’s Health Ireland), Temple Street.
It was a day his Galway-based parents Nicola and Robert Harty could not have dreamed of. “We very quickly learned not to think beyond one day at a time,” says mum of two Nicola, recalling “the darkest days” after Luke’s birth last May.
“I’d had a perfect pregnancy, perfect scans, a beautiful delivery, and the labour went great. Luke arrived at 36½ weeks and was brought to NICU to be on the safe side.”
But he started having seizures — within a day and a half of his arrival he was transferred by ambulance from Galway to Temple Street for MRI.
“It was another 24 hours before we sat down with doctors, and the lead neurologist said Luke had a really rare condition — one part of his brain had grown too big, it was malformed and causing seizures.
Nicola describes feeling utter shock. “I’d given birth just three days earlier. We were in Dublin, our daughter, Robyn, in Galway — being told they’re going to remove half his brain.
“It was like standing, looking at ourselves from above, like we were physically crumbling, falling to the floor. We were just shattered.
“The doctor said, ‘You’ll be here a year minimum’. That’s all I could hear for weeks afterwards. We were told he’d have weakness in the left side of his body after surgery. They couldn’t guarantee he wouldn’t still have seizures. I felt hopeless, that we wouldn’t be able for this.”
With doctors envisaging Luke would not be strong enough for surgery until he was six to eight months old, Nicola found the next weeks “really tricky and hard”, trying to process everything. And yet, even on the hardest days, an image persisted that had first come to her within a week of Luke’s birth — of a little boy running around with Robyn on their farm in Ardrahan, Co Galway.
Despite the timeline doctors gave for surgery, Nicola still wondered about the earliest it could be carried out.
“We just wanted it done,” she says.
The couple had been told Luke might never breastfeed or feed orally. “I’d been pumping breastmilk from the beginning, which he got through an NG (nasogastric) tube. At five weeks, he latched on to the breast. It was amazing, exhilarating, a really big moment for us. It showed his determination — he was going to do everything his way. The doctors were thrilled, and we had lots of support from the nurses to make it happen.
“It signified for me that Luke and I were a team, and we were going to survive this — we were doing it together.”
By four months old, he was “a good weight and had never been sick from an infection” — doctors said they would perform surgery in two weeks’ time. “We were overjoyed… and terrified, it was really daunting but we knew it was the right thing, he needed this. The seizures were so bad, his body needed a break.”
By mid-October — on Robyn’s third birthday — Luke’s surgery was complete.
Nicola believes what helped her was never Googling his condition. “I kept saying he’s not on the internet, he’s going to do what he’s going to do, in his way. I believed so much in him that I didn’t have to Google anything. He was kicking both arms and legs after surgery and breastfeeding within 24 hours.”
During Luke’s six-month stay in Temple Street, Nicola “deleted” thoughts of Christmas from her mind. “I didn’t let myself go there. Robert and I were on the same page — living one day at a time.
“Until one day, Robert said, ‘I see him home for Christmas’. I said ‘that’s not going to happen, he’s just had surgery’ — I wanted to pull Robert back, protect him.
“And then, I started having a feeling: ‘As long as there are no complications, we’ll be home soon’.” Luke is “doing all the baby things now” and hasn’t had any seizures.
“We don’t know what his life is going to look like. Because he was so young when having surgery, his brain was only developing — like any baby, there was still so much development to happen.
“The other half of his brain is really healthy — we’ve been told that half will compensate for a lot.”
Nicola and Robert have immense gratitude for the surgery and for Luke’s medical care. “Everything about Luke, his development, his drive, has come too from love, positivity and all the prayers people said for him. And there was so much love in the hospital for him, staff coming to visit him daily — that connection and love really helped him and us on the journey.”
While Luke will now be under the care of his local hospital in Galway, Nicola says his time in Temple Street was special, and he was so popular it seemed very fitting he would turn on the Christmas lights before coming home.
Looking to Christmas, Nicola says: “I just see Christmas calm, together, united — us and our two children – full of love. Presents have generally never mattered — now they really don’t.”
Last Christmas, Colleen and Toby Smith expected to bring their then 10-month-old baby, Aoife, home for the first time, for just a few hours on Christmas Day.
When Aoife was two days old, she needed surgery to remove most of her small bowel. “It was twisting in on itself. It’s rare, but it happens. We had loads of genetic tests but they all came back fine — it’s just bad luck,” says Colleen.
Aoife was still at CHI, Crumlin, in the run-up to last Christmas. She’d had to become stable on TPN — intravenously-delivered nutrition — before then becoming well enough to be weaned off it somewhat.
“It seemed to go on forever. She’d take 10 steps forward and two back. It was a long slow process. Her gut was so sensitive. Any kind of bug would set her back.”
And while Aoife’s parents and siblings, James, 10, and Madison, 15, were thrilled that she’d be spending a few hours at home last Christmas, it never happened.
“It was a disaster,” says Colleen. “Aoife got the flu, so it was just me and me in the hospital for the day. As a family, we’ve a tradition since Madison was a baby to go to my mam’s house on Christmas Eve morning and spend Christmas there. Santa comes to Mam’s house. Mam lives for it.”
Not wanting to disrupt the tradition, Toby, James and Madison went to Colleen’s mum’s last Christmas. “We FaceTimed. I was very emotional but trying to keep my spirits up for Aoife. She had a good day, her flu wasn’t too bad. The nurses made the day special for her.”
With Colleen and Toby trained in home TPN, Aoife was well enough to be discharged last March, but again had to remain in hospital because the family needed a house to suit her needs and those of her older sister, Madison, who has scoliosis and may eventually need a wheelchair.
“We needed a bungalow with ramps, a wet room, plus a big enough room to do a sterile procedure for Aoife. Cavan Co Council was instrumental in getting us a fabulous home, suitable for both girls, in Bailieborough. The ward manager on St Peter’s in Crumlin was phenomenally supportive too.”
After 19 months in hospital, Aoife’s finally home and Colleen can’t wait for Christmas.
“Just for us all to be sitting around the dinner table on Christmas Day, having normal conversation, laughing, being able to sit there and chat with Mam while the kids play with their toys, that’s what I’m looking forward to.”
During the 103 days Sophie Hendrick’s daughter, Gabriella, spent in NICU, the Maynooth-based mum and her partner David Mahon wondered if they’d ever get their baby home.
“I didn’t think we’d get home for Christmas. It felt like the days in NICU never stopped,” says Sophie, who couldn’t have expected Gabriella to come three months early — her first pregnancy with Emilia, now aged eight, had been normal. But at 23 weeks, having breakfast one Sunday this summer, Sophie felt a gush.
“I checked and it was blood.” She immediately went to the Coombe. “They kept me in for a week and a half for bed rest. I kept bleeding during that time. I had scans to make sure the baby was OK and everything was fine with her.”
Sophie had subchorionic haematoma— blood forms between baby’s amniotic sac and the uterine wall. Doctors expected it to pass. But within days she went into labour and Gabriella was born weighing 505g.
It was challenging being in NICU but pumping breastmilk kept Sophie going. “I could see she was growing, she never got any infection and was really strong, so I felt I was doing something for her. And as much as everyone’s lovely in NICU, I just wanted to get her home.”
At one point, Gabriella was all set to leave the hospital but got croup. “She almost stopped breathing. That was a setback — we felt like we were never going to escape.”
Thankfully, Gabriella, now six months old, got home in good time for Christmas.
“Christmas is about family, and family means a lot to me,” says Sophie, explaining that she grew up without siblings, while her mum died when she was 11.
“Christmas is all about being together. You try to give your kids what you never got. My mam and I were best friends. Having two girls of my own now, they’ll be my best friends.
“Emilia has written her Santa list and she put a few baby presents on it for Gabriella. She said it wouldn’t be fair otherwise.”
Seeing Gabriella now, sleeping through the night, “a great eater” and with a very cheeky smile, Sophie says having a new baby makes Christmas extra special.
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