The girl in a million
6 MIN READ
We didn’t know, before Éabha was born, that there were going to be any issues. Everything seemed to be perfect
Niamh Shine and Noel O’Mahony already had a son, Eoghan, when Niamh got pregnant with Éabha back in 2012. “She was born quite quickly in January 2013 and she had a bruise on her head so they took her to have an ultrasound,” says Niamh. “We were all packed ready to go home from the Coombe and she was taken for what we thought was this routine ultrasound to check there was no bleed and then, suddenly, she wasn’t coming back.
We waited and waited and there was still no sign of her. When they eventually did come down, we were taken into a room with a team of people and we twigged then that there was a very major issue with Éabha. They’d found she had massive damage to her brain.”
Éabha had an extremely rare and severe condition
Niamh and Noel had a diagnosis within a week. Éabha had an extremely rare condition.
“Éabha had Aicardi syndrome (named after the doctor who discovered it) which is a very rare condition that only occurs in girls. It’s a completely random mutation. So, when we went on to have our other two children, Ella and Eli, we were at no greater risk of them having the same condition as Éabha as anyone else in the world. It’s one in millions.
“Girls with Aicardi syndrome have a particular type of visual impairment, daily seizures and various other things. Éabha has hydrocephalus, excess fluid on the brain. She has a bleeding disorder which seems to be unrelated but which complicates things. She’s ended up now completely tube-fed. She’s non-mobile, non-verbal, doubly incontinent. A lot of challenges,” Niamh says.
We were devastated
When Éabha was born, the couple felt, for a short time, that they had the ideal family. They had a boy, Eoghan, and now their little girl Éabha. That quickly changed.
As Niamh explains, “everything was so wonderful and then everything so wasn’t. Your life goes upside down. You don’t know what’s going to happen. Was she going to survive? I asked that question and they couldn’t tell us because there are not many girls with her condition.
Simple things like you don’t know what she’s going to look like. You don’t know what your life is going to be like. I had to give up work. I was a secondary school teacher in Neilstown in Clondalkin. We didn’t think we could cope with that at the time.”
But, even though Niamh and Noel knew Éabha had a rare syndrome, she didn’t have any issues at first.
“She was breastfeeding,” says Niamh. “Everything was going well, relatively speaking, she wasn’t presenting with any issues at that stage. But we knew we had this timebomb waiting to go off. I think everyone was surprised that we wanted to take her home but we are so close to the hospital here in Crumlin I thought if we need to get her to hospital we can do it. Plus we’d had enough of hospitals at that stage! They gave us CPR training then they let us go. I don’t think anyone knew what was going to happen.”
With responsibility for a young baby with a rare syndrome, Niamh felt she had to be extremely vigilant.
“I was watching her like a hawk. I knew what to do with a new baby but with Éabha I was like ‘can I walk out of the room to go to the bathroom? Can I leave her on her own for a second?
About six weeks after she was born the seizures started…
When Éabha was six weeks old, she started to show signs of her condition.
“I noticed these tiny movement and mentioned them to my GP. We were seen by Neurology the next day. That’s when the visits to hospital started.
She was seizing up to 100 times a day. We went in to hospital for a medication change and, while we were in there, her head circumference started to grow by centimetres every day. We were transferred from Crumlin to Temple Street to get a shunt placed late one night which drains the fluid from her head. It was fairly critical. In that first year we were in and out and in and out. Now, we weren’t in for six months at a stretch but we were in every month for a significant period of time in 2013.
Jack & Jill got involved very early
Niamh met her first Jack & Jill liaison nurse, Saundra, in hospital. Jack & Jill liaison nurses assess the needs of the family and arrange for them to get nursing care at home using nurses, paid by Jack & Jill, who provide hours for the families.
“It was after our first hospitalisation that we first met our Jack & Jill nurse and we were registered and set up. At the time, I wasn’t ready to leave Éabha yet. I was like Éabha TV – I just could not stop watching her. When the seizures started, well they can be fatal, I thought if I stop looking at her what is going to happen? I wasn’t getting a lot of sleep. We had Eoghan as well. He was just three at the time so I had to juggle them both. And Eoghan was so excited about his little sister even though all of this was going on.
I think we left her with Marlyn, our first Jack & Jill nurse, at three months. We were in the Cardiac ward because it was the only place there was a bed for us and we just clicked. She was looking for a Jack & Jill family because she had done it before. She also lived right by the hospital, close to us.”
I still don’t leave her for more than 20 minutes
Jack & Jill have made a huge difference to the family.
“I won’t leave her with anyone but the Jack & Jill nurses. They come to the house any time you want them. That’s the beauty of Jack & Jill. Sometimes, it’s not glamorous, but I might just be upstairs putting away washing. Because I don’t go upstairs if I’m here with Éabha and it’s just me and her. I can’t leave her. I could put a camera on her but I’d just be watching the camera.
Jack & Jill works round what you need
“When we got married, it was the Jack & Jill nurses that minded Éabha on our wedding day. They collected her and Ella from the hotel after the meal, brought them home and stayed the night with them.
Fiona Callaghan, Niamh’s current Jack & Jill liaison nurse, explains how she met the family. “I took over Sandra’s cases about four years ago. We have 12 Jack & Jill liaison nurses like me across the country who go into the hospitals introduce themselves to families and explain what Jack & Jill does and how the family can get so many paid hours of nursing at home a week.”
“A lot of families will say ‘we don’t need any help, we’re fine’,” says Fiona.
“You think you are,” says Niamh.
“It isn’t until they get home that families think ‘we need help’ and that means specialised help. The extended family, while they are great, they are also terrified.”
“I felt I needed time with Noel,” says Niamh. “We hadn’t had a quiet minute together to say ‘what has just happened to us’. You get a bit of time around the diagnosis, but I’m talking hours not any significant time, before you’re plunged into it. We just needed to catch a breath. Family were fantastic but they didn’t know what to do to help.
“Everyone is protecting each other,” says Fiona.
“Our families were devastated. They got the news that I’d had this healthy baby girl then 12 hours later they got this horrendous news. They had been through a trauma as well.”
“And everyone processes things differently. As a couple you need to have a moment.”
Niamh: “It’s very hard on a relationship. We’ve been very lucky but I know other couples their relationships haven’t survived and that’s all to do with the support you get and how you deal with it together and separately.”
Christmas can be a difficult time for families with a very sick child
Getting nursing care over Christmas and New Year can be a challenge.
“There isn’t as much nursing available because nurses have Christmas too! In the run up to Christmas, we don’t really get a night out. It’s a trivial thing but our friends have this get-together we’ve done for donkey’s years and the last few years only one of us goes. It’s not a big thing but we rarely get to go to things together. There are worse things but it’s a fact of life.
Christmas itself, the day, is not that different. But I have a dread of having to go into hospital. We’ve never been in hospital at Christmas but until Santy is done on Christmas morning I am going ‘are we home, are we home, are we home?’ The fear is always there.
“Sometimes finding a nurse is the difference between being in hospital for Christmas and getting out,” adds Fiona. “Most of the time, we get a nurse. Most nurses will pull out all the stops. A lot of the time they know the families and they wouldn’t see anybody stuck.”
“There’s also a bit of logistical stuff to juggle,” explains Niamh. “Éabha needs feeding supplies, syringes, meds. I have to make sure I have everything because everywhere kind of shuts down. I like to have meds over and above what we need just in case it snows or something. I know it’s unlikely. I mean it sounds ridiculous, but she cannot be without her meds, she cannot be without her feeding supplies.”
Éabha’s last ‘Jack & Jill’ Christmas
Niamh and Noel still have Jack & Jill hours until January when Éabha turns five and they come to an end.
“We’ve had the same three nurses since Eabha has been very small. I almost get them because I want to see them and they want to see Éabha. They’ve been here for Éabha, they’ve been here for the birth of the other babies. They’ve been very much in our family life. We are now approved for HSE night-time hours which means they will supply a nurse from an agency from 10pm to 8am.
“Niamh was doing the nights for a long time,” explains Fiona. “You didn’t realise how sleep deprived you were.”
“I did all the nights for the first four years of Éabha’s life,” says Niamh. “I didn’t use my Jack & Jill hours for nights. It just felt weird asking the girls to stay up all night. I know that sounds ridiculous, they are nurses after all, I don’t know why I just… …I feel like I’ve been hung-over for the last four years. I get nervous if I have to drive in the afternoons because I get really drowsy at the wheel.
I ask Niamh what Santa is bringing Éabha for Christmas.
“We’ve asked Santy for Sound Moves bands – little bracelets I can put on Eabha that connect to an app on her iPad. Every movement she makes will give some kind of music feedback. Eoghan is only dying to get his hands on it!”
There’s a little pause and then Niamh says, with feeling, “the children do love her. They are mad about her. And she’s here where she should be at the heart of the family.”
And that’s what any parent wants at Christmas.
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