‘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.

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