Sunday 23 November 2014

The lifeline children's hospices offer to Irish families

As Children's Hospice Week begins, one family speaks about the difference hospice care has provided to their families...

Áilín Quinlan

Published 16/06/2014 | 02:30

Gervin Kielt with his children, Daniel,3, Alicia, 10, and Caroline, 8, at home in their garden in Lusk. The family depends on the respite care provided to Alicia by the Children’s Hospice, at LauraLynn House. Photo: Ronan Lang/Feature File
Gervin Kielt with his children, Daniel,3, Alicia, 10, and Caroline, 8, at home in their garden in Lusk. The family depends on the respite care provided to Alicia by the Children’s Hospice, at LauraLynn House. Photo: Ronan Lang/Feature File

EIGHT-year-old Alicia Kielt suffers with epilepsy, uses a wheelchair and needs constant support. She cannot eat by mouth and is peg-fed.

EIGHT-year-old Alicia Kielt suffers with epilepsy, uses a wheelchair and needs constant support. She cannot eat by mouth and is peg-fed.

The Lusk, Co Dublin, girl suffers from severe global developmental delay; she has visual impairment, needs constant support in positioning and is on a number of different medications.

Feeds need to be given slowly to prevent vomiting, which in turn can cause chest infections and, as Alicia cannot manage her secretions, she needs to be suctioned regularly.

One of three children in the Kielt family – her siblings are 10-year-old Caroline who has Down Syndrome and three-year-old Daniel – Alicia has required constant care since she started having seizures at just eight-weeks-old.

Explains her Dad Gervin, who gave up his job on the Aer Lingus ground-handling crew in 2008 to look after his daughter: "Initially we were told it was infantile spasms, but it escalated and her condition deteriorated."

Although numerous tests have been carried out over the years, the family still has not received a confirmed diagnosis. "The doctors have told us that she has severe global development delay.

"Alicia's care has been very complex. She needs round-the-clock care – we sleep with one eye open and we monitor her carefully; it's very intense."

Gervin and his wife Myra, an accountant, get some much-needed nursing support from the Jack and Jill Foundation, while the regular respite care provided by Ireland's only Children's Hospice, LauraLynn House, is a godsend, he says.

An eight-bed palliative care unit, LauraLynn House plays a crucial role in the lives of families such as the Kielts whose children have life-limiting conditions – a fact which will be highlighted during Children's Hospice Week, which runs until next Friday, June 20.

The Week focuses on the round-the-clock care provided to seriously ill children such as Alicia by families, professionals and LauraLynn.

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"We get two nights a week respite for Alicia from LauraLynn," says Gervin.

"It's very important for us as a family because it gives us time to spend with our other two children.

"LauraLynn is crucial to our lives. Those two nights are nights that we get proper sleep; we also have time to give the other children our attention."

There should be more facilities like the LauraLynn Hospice out there, he says:

"The fact that there's only one facility like it in Ireland is crazy.

"The facilities in LauraLynn are fantastic. The children are very well cared for and we have complete peace of mind leaving Alicia there.

"We have huge trust in the staff and we know if there is any problem they will contact us immediately."

Alicia has been receiving respite care for the past six years – prior to the opening of LauraLynn House in 2011, she received respite support from the Children's Sunshine Home on the same grounds.

Says Gervin (41): "We hugely appreciate the care and support we receive from LauraLynn". He adds that the hospice, which he describes as "perfect" for Alicia's needs, recently took the little girl for a week of respite care, enabling the rest of the family to enjoy a much-needed holiday, in Wexford: "We were still close by but we had a great break!"

A short break at the hospice on the Leopardstown Road for a seriously ill child may be the only time a family can get a proper night's sleep.

Parents who wish to stay with their child during respite care, can avail of the hospice's self-catering family accommodation.

The hospice provides palliative care and support for children with life-limiting conditions from birth to age 18 from all over Ireland.

This summer LauraLynn – which provides all care free to families – is piloting a special programme in the North East and Leinster regions, providing hospice care for children in their own homes.

The facility also recently established a Clinical Education and Research Department, whose remit is to provide a range of educational programmes and initiatives for healthcare professionals and others interested in improving quality of care.

A variety of fundraising activities in aid of the work carried out by LauraLynn will take place throughout Children's Hospice Week.

Supporters can donate €4 by texting LAURALYNN to 50300 or engage in other fundraising activities.

For more information email info@lauralynn.ie, phone 01 2893152 or visit the website at www.lauralynn.ie

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