Nurses now ‘part of family’
The McGorrys are one of six families in County Cavan being assisted by nurses from the Jack & Jill Foundation. Michelle Taite caught up with them to learn more about their daughter Tara's condition and how the foundation helps the family...
Sarah believed her pregnancy was much like any other. Having had a baby two years earlier, she was sure she knew what to expect.
Hospital scans showed, early on, that their second child was slightly small. However, Sarah and her husband Shane were assured it was nothing for them to worry about.
Fast forward a few months and baby Tara came into the world. Her parents believed she would be 100% healthy, just like their older son. Little did they know the arrival of their daughter would change the course of their lives forever, in a way they never would have expected.
“Tara was born in Cavan General and we never knew about her condition beforehand. We weren’t expecting anything really as such. We knew she was going to be a little bit smaller, which was the only thing that really showed up but we were never prepared for anything afterwards,” says Sarah, smiling at her daughter who was perched in a high chair across the kitchen.
“After she was born little, things started showing up. She wasn’t feeding well and she wasn’t gaining weight, all these little flags that the Paediatrician was worried about. So we had genetic testing done on her and that’s when we found out about her chromosomal depletion. It was just a shock to us. We weren’t prepared for anything like that.”
The McGorry family's lives were suddenly thrown into a whirlwind of appointments with doctors and specialists as they tried to get to the bottom of Tara's condition.
“We spent a few weeks between Cavan and Temple Street getting different tests and stuff done, trying to figure out, because it’s such a rare condition,” remembers Sarah.
When the family finally left the hospital with their newborn, the maternity ward manager offered to refer them to the Jack and Jill Foundation, a children's charity that provides support for children with neurodevelopmental delay in Ireland.
Unaware of what the charity did, their immediate response was 'no', they could manage themselves. However, when the manager insisted they could use some help, the family graciously accepted.
The process was incredibly quick, the charity’s local liaison nurse visited their home to meet Tara, giving them all the information they needed over a cup of tea.
“There was very little paperwork. It’s the last thing you’d be thinking about at that sort of time when you’re going through that. We wouldn’t have been up to any sort of lengthy process in terms of filling out application forms or anything like that,” admits doting dad Shane.
Sarah agrees. “There’s so much else going on, you’ve a new baby coming home with all of these other medical conditions, to start having to worry about paperwork and stuff like that, you couldn’t take it on at that time. She [the liaison] basically said - here’s a couple of nurses' contact details, contact them and you can arrange for them to come. It was as simple as that.”
Over the past five years, the Jack and Jill nurses have become a feature in the McGorry's home - helping care for Tara's needs. The family received the maximum monthly hours available to a family from the foundation. In addition to supporting the family, the nurses taught Tara’s parents about their daughter's condition and how to care for her needs.
Tara has an intensive daily routine, which begins at 6.30am every morning. She takes an array of medications throughout the day, multiple tube feeds, some small meals and a hormonal injection every evening. Her bedtime routine then takes approximately two to three hours.
“She may sleep four hours, five hours or eight hours, some nights it might be one hour, it could be anything with Tara,” agree both parents.
Such a routine could take up the couple's every waking moment, however the family have learned to lean on the nurses to free up some personal time.
On days when Sarah and Shane need a break, or have an event, the nurses take over their duties for a few hours and allow them to spend quality time with their two other children, Fionn and Annie. Today, they can’t imagine their lives without the charity's help.
“They’re like a security blanket, they’re always there in the background. We always knew that if we needed something the Jack and Jill nurses would come.”
Part of the family
Sarah points out how personal the nurses' visits became, as they became accustomed to Tara’s mannerisms and personality. This level of personal service is one, they feel, they would not be able to receive from any hospital or clinical setting. “They got to know Tara so well so they were able to come to the house and say - 'oh, Tara looks good today!'
“We had professional, medical people coming to the house once a week or once every couple of weeks. It gave us peace of mind as well. If we weren’t sure if she was unwell or if she needed to go to the hospital, we’d get their opinions. They were like part of the family.
“The thoughts of strangers coming into your house can be daunting but then they’re not strangers anymore."
With the help of the Jack and Jill Foundation, Shane was able to continue working full time, while in the last year Sarah returned to work as a Special Needs Assistant (SNA) in the Holy Family School in Cootehill where Tara started school in September.
After Tara’s last birthday, the hours available for the McGorry family were reduced from 40 to 20 per month. This is partially due to the fact that she was starting school.
“It [the hours the past few years] has just given us time to catch our breath and get to know Tara’s condition and get confident in our ability.”
While the family dread the day that the charity pulls away from their family fully, they are now confident in their abilities and their knowledge of Tara’s condition because of the support they received over the past five years.
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