"We have been a mother and father. Now we want to be parents." They were the parting words of Shane Ó Foghlú and Ellie Curran last time we met.
Appearing cryptic out of context, those two sentences encapsulated the moving interview they had just given about having and losing their first-born twin boys, and their longing for another baby.
In the ever-decreasing attention-span of the media, it is not often you get a chance to go back and find out “what happened next” in the lives of interviewees. But two years after talking to Shane and Ellie in the formal surroundings of the Rotunda Hospital’s boardroom, I am back with them, this time in the comfort of their home in Artane, north Dublin.
Four stunning, framed pieces of artwork on the wall of the hallway sum up the couple’s story – then and since. Two of the frames contain heart-renderingly-tiny ceramic hand and foot prints of their twins Aidan and Donnacha but they are flanked by two more frames with small, but almost giant in comparison, hand and foot prints of Éabha and Rian.
The couple’s happy anticipation of parenthood first time around was shattered by the fatally early arrival of Aidan and Donnacha at the Rotunda Hospital in 2015. Aidan was just 23 weeks old and weighing 660g when he was born on September 30th, leaving his brother in the womb.
Within 24 hours, the neo-natal team had to tell the couple they had done everything they could for Aidan and they agreed to the removal of life support. He died in their arms soon afterwards.
Three days later, when Ellie’s temperature soared due to an infection, she had to be induced for the delivery of Donnacha on October 3rd. Although aged just 23 weeks and three days, he weighed 800g and his lungs were more developed than his brother’s, so there was hope.
“We got to hear Donnacha cry – and there was even a little piddle,” Shane recalled in the last interview, with a flash of the easy sense of humour the couple share. But despite better lungs, Donnacha had bleeds on the brain and on October 6th they had to watch him too lose his struggle for life.
Seed was sown
During that traumatic time, a seed was sown when Aidan was put in a cooling unit known as a “cuddle cot” and left with them in their private hospital room. A plaque on the cot recorded its donation.
“I remember thinking some other family had sat here a year, or years, ago, had gone through this, had fundraised and because of them this cuddle cot was available,” says Shane. “Because of that cuddle cot we got to spend time with Aidan – he was our baby; he stayed in the room with us, we slept with him.
“If it hadn’t been for those parents . . . we would not have had those experiences. At the time, we said, we don’t know how we’ll do it, or when we’ll do it, or where we’ll do it, but we will give something back.”
It was their giving back that was the subject of their last interview, which was published in The Irish Times on September 20th, 2016. They had fundraised for an initiative called "Aidan and Donnacha's Wings" (donations can still be made at rotundafoundation.ie), to give every parent who loses a baby in the Rotunda the opportunity to have imprints in clay taken of the hands and feet and then made into ceramic "outprints" by artist Louise McCabe of For Keeps.
The day after publication of that interview, Ellie gave birth to a daughter, Éabha, just before the first anniversaries of the births and deaths of Aidan and Donnacha. Not surprisingly, it had been a pregnancy fraught with anxiety – particularly around the time she had delivered previously
The cause of the twins' premature births was unknown so, next time around, obstetrician Dr Fergal Malone, the master of the Rotunda, promised them "belt and braces", says Shane. Ellie had a cervical cerclage (stitch) as well as weekly progesterone injections in the later stages.
She was induced at 37 weeks, to try to ensure she and Shane would be at home with their baby before their sons’ anniversaries, and the delivery was by Caesarean section in the end.
“I was beginning to lose my marbles,” says Ellie. “I had been in there for 12 hours, heard every scream in the hospital and at 7pm there was no movement.” She recalls Malone saying: “‘I am really sorry Ellie, I might have to section you’ and I was like ‘Section me!’.”
“It was amazing,” she says of Éabha’s arrival at 9.45pm on September 21st. 2016. But two days later, on Ellie’s own birthday, “she was diagnosed with an undiagnosed cleft palate”.
That morning, Éabha hadn’t latched on to the breast and was quite jaundiced, so a doctor took her off for a blood test. He spotted the hole in her palate when she cried. “It was quite far back,” says Shane. “It was easy to miss.”
“Needless to say, I thought the world was falling around me again,” Ellie continues. But the hospital’s cleft co-ordinator was soon with them and once they were given special bottles and teats, she could feed properly. But it did mean Éabha couldn’t be breastfed so Ellie was pumping breast milk to be given through a bottle. “It was stressful. You’d pump for an hour, get 25ml and then spill it,” she says.
Éabha needed various appointments – for dental, speech, and eye checks because a cleft palate can have wide-reaching effects in the skull – so it wasn’t quite the straightforward discharge they had hoped for.
Those early days were tough at times, admits Ellie, because as well as the normal mood swings after having a baby, she and Shane were also crying over the two big brothers who hadn’t made it just a year previously.
It did help to actually have a baby to hold and to mind at the time of the boys’ first anniversaries,” says Shane, “but it was still hard”. He knows people wanted to think having Éabha would “fix” them.
“It’s so well-intentioned. People see the pain you’re in, the hurt, the longing. They want you to be better, as they see it. But it’s not a matter of ‘fixing’. No matter if we had 10 more babies, we would still miss Aidan and Donnacha. There will always be a hole there.”
For the boys’ birthdays, the couple got them each a chocolate biscuit cake decorated with blue and white butterflies and they released balloons as well.
With Ellie in the twilight of her 30s, they didn’t want to wait long before trying for another baby and within nine months she was pregnant again. She was anxious but not as anxious as with Éabha, being a bit more confident the cerclage and progesterone injections were going to work again in preventing another premature birth.
They didn’t care whether it was a girl or a boy “but my big thing was whether it would have a cleft palate”, says Ellie. “In the scheme of things, a cleft palate is nothing really but I can guarantee you that the whole of the Rotunda breathed a sigh of relief when there was no cleft palate!”
Soon after Rian’s birth on May 1st this year, Shane and Ellie could hardly believe they were walking out of the Rotunda with a healthy baby who had no follow-on appointments other than the normal six-week check. “He’s just the business,” she laughs. Life with the two small children “is manic”, says Ellie, “but we wouldn’t have it any other way.”
“Tough but brilliant,” is how Shane sums up parenthood. “Nobody can explain to you how wonderful it is. All the little things and all the firsts. You see little glimpses of the personality evolving.”
Grief still hits at unexpected times and in unexpected ways, such as last July when Dublin footballer Bernard Brogan put the first photograph of his newborn twin boys on Instagram. Ellie had sat beside him in a waiting room at the Rotunda when his wife Keira Doyle was 20 weeks' pregnant, so she knew that was where they had been born.
Seeing somebody pushing a purple Out ’n’ About double buggy is another trigger because that is what they had ordered for the boys. As it happened, they ended up getting the same model of double buggy to use with Éabha and Rian – but they made sure it wasn’t purple.
Or, now, seeing three-year-old twin boys. “It’s hard to put into words how it just gets you, even though you feel it shouldn’t be getting you,” says Ellie
The couple, both primary-school teachers, still struggle too with that most casual of questions: “how many children do you have?”
‘Wracked with guilt’
“This comes up every week,” explains Ellie. “Somebody asked me the other day and I didn’t know the person and I said ‘two’ and I was wracked with guilt afterwards.”
“It’s not that you are denying them,” says Shane. “Sometimes it’s the person and you think ‘I just don’t want to have this conversation’.” More often he would say “four kids, two living, or two angels”.
You don’t want to spend your evenings counselling people, when they’re in a state of shock after being told what happened, says Ellie.
The six-part, fly-on-the-wall documentary series on the Rotunda Hospital, which finishes this Thursday (October 18th) on RTÉ2, has been compulsive if at times painful viewing for Shane and Ellie. It was an emotional moment when the credits rolled on the first programme and Arnaud and Aine, whose son had been delivered at the hospital after dying in utero due to a foetal abnormality, were shown with their other two children, holding baby Malachy’s framed ceramic prints – courtesy of Aidan and Donnacha’s Wings.
“I was blown away,” says Ellie. “I was glad I didn’t know it was going to be there – it was such a fabulous surprise.” There was “pride, that our boys would have contributed to this”, says Shane.
Almost 180 other bereaved parents have been presented with prints since the initiative started and for which the couple fundraised €30,000. It costs about €11,000 a year to run and Carla Glynn of the Rotunda Foundation estimates they have sufficient funds for another year.
But, as Shane and Ellie have done more than enough, the foundation is launching a fresh campaign for funds to continue honouring the memory of Aidan and Donnacha and to make sure every grieving parent who walks out of the hospital without a little bundle in their arms will at least have a lasting memento of the life they created.
As the tag line Ellie and Shane chose for the initiative says: “There is no foot too small, that it cannot leave an imprint in this world.”
European standards
The first set of European standards for the care of pre-term and ill newborn infants will be launched at the European Parliament in Brussels at the end of next month (November).
The Irish Neonatal Health Alliance (INHA) has been collaborating on the huge project involving 200 healthcare professionals and parents of premature babies.
This guide to best practice is divided into 11 topics, ranging from birth and transfer of babies to nutrition and design of neo-natal intensive care units (NICUs). The Republic’s maternity units have been signing up to the standards but the challenge will be to convert them from targets to reality.
Mandy Daly, a co-founder of the INHA, says she hopes this international benchmarking of best practice will encourage all the neo-natal units here to reflect on their current performance and see where there is room for improvement.
Staff at the coalface of neo-natal care in this country are doing their best, she says, but they are working in archaic settings with not enough resources.
As to where we would aspire to be, “Sweden” is Daly’s quick answer. For instance, there are single neo-natal units there, containing one incubator alongside a bed for the parents, where families can care for their pre-term baby with the help of medical staff for as long as it takes before the newborn is ready for discharge home. They also receive income support for the duration.
The theme for the INHA’s annual World Prematurity Day symposium on November 16th in Dublin will be ‘bonding and attachment’. The alliance believes there is not always not enough emphasis on the importance of this in hospital neo-natal units.
Meanwhile, in the run-up to World Prematurity Day, which falls on Saturday, November 17th, the support organisation Irish Premature Babies (IPB) says the lack of availability of hospital-grade breast pumps in neo-natal units is a real issue for parents of early-term babies.
Breast milk is like “liquid gold” for these tiny infants, explains Stacey Dooley of the IPB. But when a mother has given birth so early, her body goes into shock and it is very difficult to produce milk for one baby, never mind for multiples.
She says on one day alone recently she got six calls from mothers at one maternity hospital who needed high-power breast pumps, which cost about €5,000 each. The IPB fundraises for them and has 15 now that it rents out at a low price for a maximum of three months “and there is always a waiting list”.
Irish Premature Babies was set up in 2009 to offer information and peer support to parents.
Early arrivals by numbers
– Born before 37 weeks is considered premature.
– 6.5 per cent of all live births in Ireland are pre-term.
– 4.6 per cent is the rate for multiple births.
– 64.8 per 1,000 live births and stillbirths is perinatal mortality rate for babies born before 37 weeks.
Source: Perinatal Statistics Report 2015
