Daily Mirror (Northern Ireland)
At breaking point as we keep our little girl alive through the night
Mum of 5-yr-old with heart failure needs care help
THE mum of a five-year-old girl suffering heart failure said the family are at breaking point because they have no back-up care for her at night.
Gaby Irvine, from Co Down, needs round-the-clock support to ensure she is able to breathe.
But when her carers are on annual leave or unable to stay with her if they are ill, Gaby’s mum must stay awake all night to ensure her daughter remains alive.
However, Lynsey also works as Gaby’s classroom assistant at Millisle Primary School near their home and is her full-time carer during the day.
By the end of this week she will have had no help to look after her daughter’s night-time needs for five days and without the sleep she needs, the 30-year-old mum of three said she is at breaking point.
Lynsey added: “Gaby has brilliant carers but they need annual leave and they can get sick too and Gaby cannot afford to be with people who are sick because her defences are so low.
“So we are facing five out of eight days without any help and that means I literally have to stay awake 24 hours to make sure Gaby is OK.
“At night she sleeps in a bed in the living room and she is monitored around the clock. She can need suctioned or ventilated and she can need oxygen too. Gaby cannot sleep on her own without someone to watch her.
“At the age of five she has already had three open heart surgeries and life is hard for her. But she never complains although she is starting to notice that other kids aren’t ventilated like her. So it’s heartbreaking to try to explain what’s going on.
IMPOSSIBLE
“We were offered 110 hours of care for her every week but I said we would manage with 70 but now I’ve been told that when Gaby’s carers, who we love, are on annual leave or are sick, we will have no one to cover for them.
“That leaves us in a pretty impossible situation. I’m really not someone to complain about getting help but perhaps that’s why we’re in this position and now we’re at breaking point.
“We have just spent the weekend doing night shifts so that means staying awake to watch Gaby sleep, doing her medicines, monitoring her oxygen levels, all the things she needs done to live her life as normally as possible.
“We’ve been told now by the South Eastern Care Trust [it] cannot cover the sick leave and we also have no cover three nights of this coming week because there is no cover for annual leave.
“I have been told the Trust has advised not to cover annual leave or sick leave in Gaby’s package and then I was told everyone is in the same boat.” A spokesman for the South Eastern Trust said: “The lead nurse is going to meet mum at 1pm tomorrow to discuss this case further.
“All community support packages are individualised and agreed with each user. “The Trust has been in contact with the family today and will continue until the matter is resolved.”