‘We were bringing her home to live, not to die’

Jack and Jill extends its end-of-life care service to children under four with any condition

Tue, Jun 17, 2014, 17:21

The wooden bookcase is full of birth mementos, including a snap of an antenatal 3D scan, a bracelet, pair of little bootees, christening candle and a big white teddy that is surprisingly heavy to lift because it was made to a baby’s weight.

There are albums of photos too, some of which have been framed and arranged around the living room, as well as outside in the hall. A little newborn bundle with her mother in one, with her father in another, and with her four siblings in more.

They are silent testimony to the seventh member of this Co Wexford household, Muireann Shionagh Dunne.

Her parents, Mandy and Tom, had been looking forward to a first glimpse of their fifth child when they went for a routine antenatal scan at 20 weeks. But at 9.32am on December 1st, 2011, says Mandy, “Our lives fell apart” when the scan showed fluid on her brain.

More scans and amniocentesis followed before they were told their baby had Patau’s syndrome, a condition “incompatible with life”. The chromosomal abnormality had prevented normal development of the brain and if the baby survived the rest of the pregnancy, she would probably not make it through labour.

“When at 20 weeks you are told about this, you have 20 weeks to get in your mind what you want,” Mandy says of preparing for her baby’s arrival, alive or dead. Although they knew going abroad for a termination was a possibility, it was not one they considered.

“It would never have been an option for me,” she explains, acknowledging that everybody copes differently in such a situation. “We were going to be grateful for whatever time we had with her. When her time was up, it was to be on her terms and not ours.”

They waited as long as they could before sharing the news with their other children, Conor (now aged 17), Jack (13), Tadhg (10) and Aoibhean, who is seven.

“I wanted to get my head ready, so I could be fair to them and answer them as truthfully as I could,” says Mandy. But by about 30 weeks, word was getting out in their parish of Marshalstown, outside Enniscorthy, and she and Tom were getting an inkling that other kids might be starting to talk about it.

“We sat them down and told them everything,” says Tom. It was a tough conversation, but they were glad to have had a chance to prepare for it.

“Even when we told them, they were waiting for our reaction, to take the lead from us,” Mandy says.

After being induced at 39 weeks in Wexford General Hospital, Mandy decided not to have the baby’s heartbeat traced during labour.

“Hope was keeping us going,” says Mandy. “I didn’t want to hear if she had died during labour.”

When Muireann was born the doctor took her, looked at her, wrapped her up and handed her straight to Tom, saying she would probably have a few minutes at most.

“I sat cuddling my daughter, numb to what they were telling us, trying to examine every inch of her little face before she passed away,” says Mandy. They had both a priest and a photographer on hand after the birth, for a quick christening and photos to remember her by.

Then Muireann shocked everyone. She started to cry, and slowly turned from grey to pink. Her siblings were in to see her within hours, not fazed by her cleft lip and palate, which they had seen on images from the 3D scan. Her brother Tadhg said her mouth was “like a star”.

As the hours passed, bringing her back to the family home alive seemed a real possibility.

They hadn’t got the house “baby ready”, so they went into panic mode, says Mandy, thinking, “We have to get this, we have to get that: her steriliser was a mayonnaise bucket.” However, having had four children they knew they could look after her.

“It wasn’t the panic of having a new baby and then a new baby that was going to be sick,” she says. “To us she was just Muireann and we were ready to cope with whatever was thrown at us.”

What gave them a lot more confidence was a visit from Joanne Doyle, the local liaison nurse with the Jack and Jill Children’s Foundation, at the hospital the following afternoon. In addition to its home-respite care for families of children with brain damage, the charity also runs an at-home, end-of-life service that is now being offered for children with any condition, aged up to four years.

“When you are coming home with a really sick child and you feel like you are on your own, you don’t know how things are going to work out,” says Mandy. “After talking to Joanne, it really made us more comfortable about going home.”

They were determined to make the most of whatever time the family had with Muireann.

“We looked on it as if we were bringing her home to live, not to die,” Mandy stresses. It is a philosophy that Jack and Jill encourages parents to adopt.

With Doyle’s reassurance, Muireann was wheeled to the school gate to collect her siblings, went to Mass, was brought clothes shopping, joined a family visit to the Kennedy Park in New Ross and made it to Tadgh’s First Communion.

Tom struggled with going back to his job with the ESB two weeks after her birth, hating the separation and afraid he might be working too far away to get home in time if Muireann took a turn for the worse.

However, the flip side was a welcome sense of normality, he says. Mandy was at home with the five children and he looked forward to seeing them all at the end of the day.

Mandy agrees: “When you are off work for that long, you are living your life waiting for her to die, and that is not what we wanted to do.”

On a first night away with the whole family, Tom and Mandy became very concerned about their youngest daughter when, at about 3am in their hotel room in Portlaoise, her temperature spiked.

“The two of us just looked at each other and packed,” says Mandy. “We knew at that stage we had to get her home.”

Back in Co Wexford that Sunday morning, there was only one person they were going to call. Joanne Doyle immediately abandoned her plan for a post-Confirmation outing with her own family and drove over from her home in Kiltealy, about 16km away.

“That is the beauty of our job, we are given that flexibility,” says Doyle. “For ye,” she says turning to Tom and Mandy as we chat in their living room, “imagine if you couldn’t have got me that day.” It’s a prospect they would rather not contemplate, because they know they would have rung for an ambulance.

“That isn’t what we wanted; Muireann would have died in the hospital, in a bed, probably with tubes and things,” says Mandy. “I wouldn’t have wanted her to end up back there and not be here with everybody.”

Having Doyle in the home, checking Muireann’s medication and breathing, “meant we could be just mammy and daddy”, says Mandy.

Doyle remembers the Angelus bell was ringing at St Joseph’s church in the village below when she stepped out the front door of the Dunnes’ home that Sunday evening, May 27th, 2012, to ring for a doctor to come and certify Muireann’s death. It was six weeks to the day after her birth.

Her grave is beside that church, a spot her big brother Conor chose to write about when given the topic “A place I consider beautiful” for a school essay, and that Mandy came across by chance in his bag.

d“It is the place where my sister sleeps in a covered wooden bed with her favourite toys and a picture of my family, her blanket, earth and her precious flowers,” he wrote. For him it is not a reminder of the pain of losing her “but a monument to the joy she brought to our lives in the short time we had with her”.

He recalled how she could “fill my mother with happiness with just a smile” and his own “fondest memory” of holding her for the first time the day she was born. And Conor signed off with the quotation: “There is no foot too small that it cannot leave an imprint on this world.”

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LauraLynn offers palliative care @ home

The Republic’s only children’s hospice, LauraLynn in south Dublin, has just started to offer palliative care at home in a one-year pilot project.

Working alongside colleagues in the community, LauraLynn@Home will provide “hands on” care in the child’s home. Similar to the care provided in LauraLynn House, families will be able to avail of planned respite, as well as transitional, crisis and end-of-life care.

National and international evidence suggests that the majority of parents of children with life-limiting conditions wish to care for their child at home with the appropriate supports, says a spokeswoman for LauraLynn. This premise underpins Ireland’s national policy for children’s palliative care.

“We are offering families the same high-level standard of care that is currently received at LauraLynn. The only fundamental difference will be that the child will receive all care in their own home rather than at our facilities in Leopardstown,” she says.

The pilot programme covers families in HSE Dublin-Mid-Leinster (Kildare, Wicklow, Laois, Offaly, Longford, Westmeath and south Co Dublin) and HSE Dublin North-East (Cavan, Monaghan, Louth, Meath and north Co Dublin). It will run until June 2015 and the hospice estimates that up to 50 families will be involved.

Meanwhile, other providers of palliative care in the community include the night-nurse team from the Irish Cancer Society. It offers nurses free of charge for up to 10 nights for cancer patients of any age. For more information, see lauralynn.ie; cancer.ie

‘You have to look at it as an honour to be there at the worst time in a person’s life’

Seated around the large table in a first-floor meeting room is a bunch of women who have life’s priorities in order. It goes with the job.

They are the 11 liaison nurses who work with the Jack and Jill Children’s Foundation and, between them, cover the 26 counties and have accompanied hundreds of families on the heartbreaking birth-to-death journey of a short-lived child.

“You have to look at it as an honour to be there at the worst time in a person’s life,” says Caroline Thomas, who is based in Dublin. “Otherwise, it would be just too hard for us to do.”

There are two aspects to their work: they provide respite care for parents caring for children born with brain damage; and also an at-home, end-of-life service that is now being extended to all children, aged from birth to four years, who require palliative care.

What defines Jack and Jill, the nurses say, is its ability to respond, and its flexibility. Quite often it is referred cases of babies who were not expected to survive birth but for whom going home has suddenly become an option.

Applying and securing a package of home care from the HSE can take weeks, while the joy of working for Jack and Jill, says Anne Reilly, who is based in the northwest, “is that any of us can walk into a family and say ‘this is what I am giving to you and I am giving it to you today’”.

“You can have the nursing in place before the paperwork,” agrees Margaret Naughton, whose area includes Mayo, Clare, and parts of Limerick and Galway.

The charity was set up in 1997 and less than 20 per cent of its €2.7 million budget comes from the State. Over the past four years, 42 per cent of referrals were responded to within 24 hours and more than 80 per cent within 48 hours.

Some 61 of the 510 referrals since 2010 were specifically for end-of-life care, which includes covering the cost of up to 80 hours’ nursing a month and a liaison nurse on 24-hour call, who can collaborate with the HSE and the Irish Hospice Foundation on provision of additional nursing care funding.

Some families want to look after the children at home themselves, says joint nurse manager Sinead Moran, who is based in Dublin. “But they like to know the support is there if they need it.”

The liaison nurse visits two or three times a week, or every day, depending on the need, to discuss the care of the child and, for example, the management of their symptoms. She also liaises with the HSE home-care teams and the outreach nurses about how best to support the family.

Aftercare is another essential element of these nurses’ work. Although a case may no longer be strictly “on their books” after a child has died, the support for parents, through phone calls and chats over coffee, can last months, running into years.

A suggestion that these highly experienced, specialist paediatric nurses gathered in the Jack and Jill headquarters in Johnstown, Co Kildare, must be used to dealing with death, meets a chorus of denial.

“We never get used to it,” they say. “The day you get used to it is the day you should give up.” That’s not to say they don’t share their moments of black humour, which is an essential safety valve for professionals doing a stressful job.

The nurses are obliged to have “clinical supervision”, which consists of an individual counselling session every month and twice a year as a group. They also have each other. When Moran comes out of a difficult case, she will always pick up the phone to one of her colleagues, working through the list until she can get somebody. “You have to get it out of your system before you go home.”

Doyle, who covers the southeast, agrees: “I hate living down the road from a very stressful case, as the journey home can help you unwind.”

You have to be empathic to do the job, points out Cathy Keighrey, whose area includes Sligo, Leitrim, Roscommon and Westmeath. As a result, she says, “You always take a little bit of the sadness.”

And it says everything about these grounded women that not one of them wants to be promoted to full-time nurse manager and so miss hands-on time with families. “It is very much a part of who and what we are,” says Moran, who is joint manager with Saundra Nolan. “I think if you lose that, you lose the whole reality about why this was set up and why it’s so important.”

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For more information, see jackandjill.ie

swayman@irishtimes.com

 

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