Sean with baby Tilly, Lisa Marie, and their son Harry (5).

‘Help us bring our baby home’

Few names seem quite so fitting as that given to little Tilly Wall.

“It means ‘battle ready’,” mum Lisa Marie Gaffney explains. “She’s been through quite a few of them already.”

It has been that way ever since Tilly was first delivered by emergency C-section, born three-and-a-half weeks prematurely on January 22 at Cavan General Hospital, “unable to breathe”.

When Tilly continued to “struggle” in incubation at Cavan’s Special Care Baby Unit, medical staff there “blue-lighted” her immediately to ICU at Our Lady’s Children’s Hospital, Crumlin.

Weakened and still lying in a hospital bed in Cavan, Lisa Marie received the phonecall every parent dreads.

“They rang me and said ‘we’re sorry but we don’t think she’s going to make it’. I’ll never forget it. I remember every word. It’s something that never leaves you. To not be able to physically leave the hospital to be there for her either, it was just absolutely horrendous.”

As Lisa Marie’s world “stood still”, doctors gave baby Tilly a “50-50” chance at survival.

“Those were the longest three or four hours of my entire life. It was really hard to incubate her, but they managed it thankfully, and a few days later Dr John Russell and his team put a tracheostomy in, and that’s what she’s been breathing through since.”

Tilly, now almost five months, was born with Pierre Robin Sequence, a rare congenital defect characterised by an underdeveloped jaw, tongue displacement, and obstruction of the upper airway.

“Her chin didn’t develop fully and, as a result, she had a cleft palate in the roof and her tongue covered her airway. So she had no way to breathe, more a mechanical thing, but something that can happen to anybody.”

The numbers born with PRS count only in the tens of thousands globally per annum. Incredibly, however, there are an unprecedented six babies being cared for in Crumlin currently.

While the tracheostomy means little Tilly is unable to verbalise sounds, even cry, Lisa Marie says her daughter is uniquely expressive, though her bright eyes and tiny smile.

“It sounds bizarre but we’ve gotten to know exactly what she’s doing or thinking through her eyes and her smiles. She’s a real cutie, very funny,” laughs Lisa Marie. “She loves the craic too, like her brother Harry. She loves television, absolutely loves music, how could she not, it’s all she would have heard with me working. She’s just a really placid character. She’s been through so much already, on a daily basis, but remains so strong.”

Tilly’s increasing alertness is making the weekend changeover all the more difficult for the family who live close to the banks of Lough Sheelin. “It’s getting much harder on Friday night, because she knows us now, she’s kicking and dancing in the cot when she sees us. She’s not just a baby lying there unaware. She’s such a character, she’s going to be great,” Lisa Marie adds with real pride in her voice.

Tilly, for now though, remains in Crumlin’s Transitional Care Unit until such time as Lisa Marie and Sean are fully trained in tracheostomy.

Up to now Lisa Marie has stayed by Tilly’s side Monday to Friday, swapping with husband Sean at weekends to care for the couple’s young son, Harry, aged five.

What gives Lisa Marie and Sean “hope” for the future has been the experience of meeting with other families of babies born with PRS, some further along in the process of organising to bring their child home.

The “bubble” of solidarity shared by parents of young children attending Crumlin gives the Cavan family strength too.

“Walking that famous long corridor you always hear about; it’s the longest walk you’ll ever take if you’re the parent of a sick child. But you could meet someone you’ve never spoke to before, one look, and you’ll know. It’s an unspoken bond, you know what each other is thinking, what each other is feeling. You just know.”

The package secured for Tilly includes both day and night nursing and, in order to ensure there was enough response to the tender being managed by the HSE, Lisa Marie took it upon herself to share the details on social media. The feedback has been “overwhelming” she says.

“I knew it needed more impact. I’ve never been one to sit on the fence. At the same time I’ve seen families [in Crumlin] there for over a year. We can’t let that happen with Tilly. Harry’s life has already been affected, and we both work full-time. Thankfully, medically, she doesn’t need to be in a hospital any more. She’ll have outpatient care and a tracheostomy for a number of years, but that can all be managed from home.”

This week the family - Lisa Marie, Sean and Harry - all hope to be together. “[Harry’s] only met her a handful of times because of restrictions, which is very tough, and we’re not allowed to bring her fully out until we’ve finished our [tracheostomy] training. But that ends this week, and again Ronald McDonald House will come into play there. We’ll be able to bring her out, and he’ll get a chance to come up and visit his little sister, so from here on it’ll actually start to feel like a family unit.”

Anyone qualified in tracheostomy care and interested in working with baby Tilly is asked to contact Lisa Marie on 086-3827326.