‘The first time twins lay together was at their funeral’

We hear about ‘miracle’ premature babies, but not so much about the parents who leave maternity hospitals empty-handed

 

If anybody had told Shane Ó Foghlú in advance that he would bathe the body of his baby son who had just died, he reckons he would have “run away” from the very idea. But when the moment came, “it was the most natural thing and the most beautiful thing in the world”.

It is one of his most tender memories from a week of extreme emotions this time last year, during which he and his wife, Ellie Curran, got to meet their first children, twins Aidan and Donnacha, born prematurely three days apart. And then had to say goodbye, as both boys, in turn, lost their struggle for life.

Sitting in the boardroom of the Rotunda Hospital in Dublin, the couple recount, with pride, sadness and darts of wry humour, the precious hours and days they had with their sons at this hospital.

New beginnings

September is routinely a time of new beginnings for Shane and Ellie, who are both primary school teachers, in Scoil Neasáin, Harmonstown and St Helen’s Senior NS, Portmarnock respectively. When they met their new classes at the beginning of the 2015/16 school year, they were happily anticipating becoming parents for the first time themselves.

They knew that, statistically, there were more risks attached to twin pregnancies but hadn’t given it much thought, familiar as they both were with teaching children born in pairs. Indeed, Shane has three sets of twins in a class of 32 this year.

Ellie “sailed through” the first 22 weeks of pregnancy, before starting to feel uncomfortable. That was put down to a growth spurt and a scan on Monday, September 28th last year, at 22 weeks and six days, showed all was fine.

But just two days later, on the Wednesday morning, Ellie knew something wasn’t right.

“I ran out of school about 9.30am and Shane met me at home at 10am and he called an ambulance.”

Within 40 minutes Aidan was born alive at the Rotunda, weighing 660g but just 23 weeks old. His twin, Donnacha, “was too snug”, Ellie says and she was put on bed rest to give him every chance of spending more vital time in the womb.

“Donnacha could have arrived an hour later, six hours later, the next day,” says Shane. They were told that the longest a second twin had stayed in the womb after the first being born was up to two weeks but that every day helps the lungs and brain develop a little bit more. However, with Ellie having already delivered one baby, she was at risk of infection.

With his wife confined to bed, Shane was making frequent trips to the neonatal intensive care unit (NICU) and then relaying updates to Ellie. Her bed was manoeuvred into the unit on Wednesday evening when Aidan, who had severe breathing difficulties and bleeds on the brain, was “christened, confirmed and just short of being married”, she says.

No successful outcome

But by Thursday morning the neonatal team had tried everything and believed there would be no successful outcome. Shane and Ellie had already agreed that they didn’t want prolonged interventions “just to postpone the inevitable”.

Aidan was brought to Ellie’s private room in his incubator. “We were told that when we were ready, they would start taking off all the wires that were keeping him alive,” says Shane.

They got to hold him while neonatal palliative care nurse Marie Lynch was quietly taking photographs, which would mean so much in later days.

“He passed quite quickly,” says Ellie and then, as the couple wondered what would happen next, Marie soothingly led them into the next stage of washing Aidan and picking out clothes for him. Getting to choose clothes for him was a small thing but so important and their request that the green hat he had been wearing in the NICU be replaced with a blue one to match his babygrow was no problem.

“It’s nothing but it’s everything,” says Shane. Within hours of Aidan’s passing, Shane faced the possibility of losing not only the second baby but Ellie too as her temperature climbed due to infection. She was induced at 2am on the Friday morning and their second son was born at 23 weeks plus three days, weighing 800g. His lungs were considerably more developed than his brother’s.

“We got to hear Donnacha cry – and there was even a little piddle,” says Shane. They were told to hope for the best.

On the Sunday, when Ellie was preparing to be discharged to their home in Artane, on the northside of Dublin, and Shane was out getting photos of Aidan printed in preparation for his funeral, news came that Donnacha had taken a turn for the worse. Although his lungs were better, he too had bleeds on the brain.

“They hoped they would stop but unfortunately they kept going,” says Shane. And once more he and Ellie were cradling a dying son in their arms.

“The only real difference was that Donnacha struggled on for a little longer without all the tubes and stuff,” says Shane. It meant everything to them to have him into the night, before he passed at 1.30am on the Monday morning.

Joint funeral

Ellie and Shane chose the Rotunda’s chapel as the most appropriate setting for the joint funeral and it was there they saw, for the first time, the twins side by side. Extended family were able to meet the boys too before the service.

“It was heartbreaking but it was therapeutic and very beneficial and lovely in its own way,” says Shane. “Everything that the staff here did was just right. It is so easy to get even a small thing wrong.”

The Rotunda has had a well-developed multi-disciplinary team caring for bereaved parents for a number of years now “because of the need”, says its Master, Dr Fergal Malone. With 9,000 births a year, and being referred very high-risk pregnancies and critically ill infants from outside Dublin, the hospital’s perinatal death rate of five per 1,000 births would be slightly higher than the average, he says.

Of the “HSE National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death” that were introduced in August, the Rotunda would have been “more or less” meeting 100 per cent of those already, he says.

The hospital always strives to give those who have experienced loss a private room, on the door of which is put a sign – the Celtic triskele symbol – to ensure “that all staff, from cleaning to nursing to medical staff, will know when entering that room; to make sure that they are more likely not to say the wrong thing”.

The importance of helping parents create and capture memories of these brief lives, which is stressed in those standards, is something of which neonatal palliative care nurses Marie Lynch and Christina Kilpatrick are acutely aware through their work at the Rotunda.

“Every minute counts,” they say. Lots of photographs are taken and presented on a memory stick to parents who, initially, might not think they want the photos, but in time are likely to treasure them.

Keepsake

During a neonatal palliative study day at the hospital last September, when Marie and Christina saw the work of artist Louise McCabe of For Keeps, who makes framed, ceramic hand and foot prints, they knew straight away it was something they wanted to offer bereaved parents as a keepsake.

They recognised that such a beautiful piece of art could be hung on the wall at home and would serve not only as a lasting memory but also provide a way for friends and families, as well as the parents, to bring the child up in conversation.

When Marie noticed a short time later, at the funeral of Aidan and Donnacha, that Shane and Ellie had captured their handprints using Mamas and Papas kits, it reinforced for her the importance of a memento like that.

“It spurred the project on,” she says. They got feedback from other staff on the proposal and put together a business plan. Calculating the cost would be about €11,000 a year, they outlined ideas for raising twice that, to get the initiative off to a two-year start.

But last January they were told there was a family who had raised money and might be interested in funding the project. Serendipitously, those potential donors were Shane and Ellie, whose twins both nurses had cared for in the NICU.

“We couldn’t have picked a better project nor two better people to spearhead it,” says Shane. The “Aidan and Donnacha’s Wings” fundraising initiative is now being launched at the Rotunda to provide hand and foot clay prints of their baby to every bereaved parent – the first maternity hospital in Ireland to do so.

The project was piloted between February and May, for deaths in the NICU only, but now it is also offered to parents of stillborn babies and also those with congenital abnormalities who may simply receive “comfort care” in their mother’s room after birth.

“If we are able to take a print we will take a print; you would check that before you suggest it,” says Maria. Staff are trained in the process of taking the imprints in clay, which McCabe then uses to produce beautifully framed ceramic “outprints” of the tiny limbs.

Shane and Ellie had decided to fundraise in memory of their sons, to help other bereaved parents who would be following in their footsteps at the Rotunda. We are inclined to hear the stories of the “miracle” premature babies who make it, not so much about those whose parents leave maternity hospitals empty-handed.

“It got me up in the morning,” says Ellie of their determination to raise money, initially to buy the hospital another “cuddle cot” – a cooling unit that allows families to spend extra time with their baby after death, as they did with Donnacha. Féileacáin, a charity that supports anyone affected by the death of a baby during or after pregnancy, has supplied all the Republic’s maternity hospitals with at least one such cot (Cooling ‘cuddle cot’ allows extra time with stillborn babies, Health+Family, May 10, 2016).

However, within days of Shane and Ellie putting up their appeal on a charity fundraising website, they had reached the €7,000 target they had for one cot.

“We were at €14,000 within a week – that was two of them – and the money just kept rolling in,” he says. They believe that for extended family and friends, donating was a way of acknowledging the boys’ existence. Through a few school and community events as well, they have raised more than €30,000 in eight months.

Tangible memories such as the hand and foot prints are “critical” in the grieving process, says Dr Malone, who is Ellie’s obstetrician. Her early delivery was “very much out of the blue”, he says. “The staff were as shocked and surprised as Ellie and Shane.”

As in the majority of cases of pre-term birth, it was “idiopathic”, meaning the cause was unknown. Sometimes an accident, infection or a medical problem such as hypertension may trigger things “but those are the minority”, he says.

While staff are on nothing like the rollercoaster parents such as Shane and Ellie experience, they do all feel what is going on with bereaved families. The hospital’s next annual, ecumenical remembrance service, which will be attended not only by staff and those bereaved in the past year but “by families who have experienced loss here 20, 30, 40 years ago”, he says, will be in the Pro-Cathedral on November 6th.

“It is such a privilege in the hospital to have the opportunity to care for families on their next pregnancy,” Dr Malone says. This is, happily, the case with Shane and Ellie, who are due another baby on October 7th.

But, “I am not going that far, sure I’m not?” she asks looking over at Dr Malone. Her fervent hope is to have the baby safely delivered before the first anniversaries of Aidan and Donnacha the week before.

Last time around, when a relative came to the hospital and admitted he had no clue what to say to Ellie, Shane suggested that “congratulations” might be a start.

“In all of this we had two sons. I had become a father and Ellie a mother; that fact could be lost in all the grief.”

Ellie agrees: “We have been a mother and father. Now we want to be parents.”

Ellie Curran gave birth to a baby girl, Éabha Anna, on September 21st in the Rotunda hospital and both they and proud dad Shane Ó Foghlú are doing extremely well.

Donations to Aidan and Donnacha’s Wings can be made through for.ie or tel 01 872 2377.

swayman@irishtimes.com

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