Maria Moynihan of the Irish Farmers Journal met 2 S.O.F.T. families.
This is her report on her interviews with the Farrellys and the Rispins.
The Rainbow Children
Baby Patrick with his parents Pauline and Patrick, brother Michael and sisters Leona, Yvonne and Rebecca
Tragedy has a way of bringing people together and the Farrelly and Rispin families are a perfect example. Although these Co Meath farmers were just a few miles apart, they really weren’t aware of each other’s existence until they both suffered identical loss. Their stories are both heartbreaking and inspiring. They are stories of loss, despair and hope and above all of families pulling together.
When Patrick and Pauline Farrelly, from Carnaross, north of Kells, were told that their unborn baby had Edward’s Syndrome and wouldn’t survive more than a few hours, little did they know that only a few miles away the Rispins were going through the same ordeal.
“He was born and he was handed to me – all I could really do at that stage was cry.”
Patrick Farrelly looked at the little boy in his big, strong arms and knew he would never grow up. Doctors had said the best they could hope for was three hours. If he survived that, he would not live a year. On January 17, 2003, baby Patrick Gerard had come into this world already condemned by Edward’s Syndrome. The chromosomal disorder, also known as Trisomy 18, had been diagnosed four and a half months before he was born. Confirmation was cold and blunt. A major heart fault, incompatible with life, too many internal problems. Words like shrapnel to his parents.
Their gynaecologist was more gentle.
“He told us that all we could do is hope for the best,” recalls Patrick. “He couldn’t guarantee that we weren’t going to have an angel. He said maybe God would give us an angel, but from here on his duty was to make sure the baby was delivered OK and it was our duty to make sure that we stayed sane enough for that to happen in five months.”
It was an impossible demand. The rest of the pregnancy seemed a lifetime. The Farrellys struggled on, aware of the inevitable but not of the when or the how.
“All we thought about was dying, rather than living,” says Pauline.
Then one evening the phone rang. It was a local teacher to say that another family in the area, the Rispins, recently had a baby with Edward’s Syndrome – did they want to get in touch?
That phone call sparked a relationship that was to buoy both families through the toughest of times.
Mary and Danny Rispin from Navan had baby Niall on September 6, 2002. It had been a normal pregnancy, no indication of any problem. When Mary was admitted to Our Lady of Lourdes Hospital, Drogheda, for a routine section she was expecting an 8lb baby. Niall was only 5lb.
“Straight away all the bells started,” she says. “The theatre was full – they knew something was wrong as soon as he was born. Then he was taken to special care.”
Edward’s Syndrome was diagnosed. There were major heart complications and breathing problems. Niall would have to be tube fed because he couldn’t swallow. He probably would not survive a week, the experts said. It was all too much.
“When you have two healthy kids and then you’re told there’s something wrong,” says Mary, “you kind of wonder whether it would be better if he died or if he lived. But when he did live we didn’t want him to die. You do bond. Sure it’s your baby. He was part of the family, and you kind of wish them on I suppose.”
Although the nurses advised the Rispins to keep Niall in hospital, they were adamant that they were bringing him home as soon as he was fit. Time was short and he needed to be with his family. After three weeks in hospital, Niall was home in Navan. The responsibility of looking after such a sick baby was overwhelming at first. Because Niall had to be tube fed every three hours, Danny and Mary took turns giving him the 20ml of feed that his little body could handle; a rota was regulated by alarm clock through the night. Then there were the oxygen and suction machines to deal with. As Niall grew bigger, it put more pressure on his heart and fluid started to build up in his lungs. He had pneumonia every eight to 10 weeks, and was in and out of hospital regularly. Every morning, the Rispins had to face the reality that Niall might not be alive at the end of the day. While they were tying to cope, they got the news that the Farrellys had been told they were expecting a baby with Edwards’ Syndrome. It took Mary almost a week to get up the courage to call. Once she did, she says it was like they had known each other all their lives.
For the remainder of the pregnancy, Patrick and Pauline Farrelly would visit the Rispins. Seeing Niall progress through the months, despite the odds, was a great source of comfort to the couple.
“It definitely kept us going,” says Pauline. “I kept saying I want what they have.”
And when they finally had baby Patrick, the Rispins were on hand once again for support and guidance when they brought their son home from hospital just a week after he was born.
Like Niall, Patrick was tube fed and needed an oxygen machine. He suffered attacks where he would stop breathing, turn grey and then go very pale. At first, Patrick and Pauline would rush to hospital, but later they were advised just to gather the family around, hold him and rub his
hands to let him know that they were there. Each attack could mean the end. But, despite the trauma and constant fear, the Farrellys cherished every second they had with their little boy. Like any new baby, Patrick was fussed over by his siblings as he held court on a foot poof in the middle of the floor. Photographs were taken, videos recorded. He was enveloped by the family.
“You know you’re not going to have them for that long,” explains Pauline. “I suppose you try to think you’re going to have them, but you’re not.”
But, as both families already knew, good wishes were never going to be enough. Even though the boys had survived far beyond what was expected, their little bodies were coming under increasing strain. One Saturday, Niall seemed to be in great form. That night, however, he was agitated. Sunday, he was unconscious. He slipped away, nine months old. That week, the Rispin family had a funeral, a Communion and a birthday. Mary and Danny will never forget it.
“We buried him on Thursday, David made his First Communion on Saturday and Niamh’s birthday was on the following Tuesday,” Mary says. “Do you know, to have three big days, one for each of the three kids in the one week. It was very hard and to get dressed up for the First Communion, which is a great day, and to have to go over and have everybody looking at you. They were feeling sorry. They did say to me afterwards: ‘I don’t know how you did it. ’ And the choir that sang for the funeral sang for the First Communion. All the same hymns.”
In a most extraordinary coincidence, baby Patrick passed away at nine months too, only living one hour longer than Niall. Knowing that he just wasn’t well, the Farrellys had taken him to hospital. After Pauline had stayed with him through the night, Patrick arrived and insisted that she go home to get some sleep. As he sat with him, he noticed that his chest was going “up and down like mad”. The doctor’s response was immediate.
“She took one look at him and just said to me: ‘Where’s your wife?’ ” recalls Patrick. “I said she’d gone home to get some sleep and the doctor said to get her back to the hospital as fast as possible. She said all this baby wants now is plenty of TLC.”
“They took off all the monitors, all the cables, everything. Then she sat me on a chair and said: ‘Nurse him now.’ So she put a pillow on my lap and spread him out. I was nursing him, waiting for Pauline to come over, and just before 12 o’clock he opened his eyes and he took in a big deep breath.
“Then he just puffed it out, looked up at me and just closed his eyes. And that was it.”
Life goes on. It has to. Patrick and Pauline had to hold it together for the sake of their four other children Leona (10), Michael (7), Yvonne (4) and Rebecca (2). Mary and Danny had David (8) and Niamh (5) to think about. They have since gone on to have Aoife. But Patrick and Niall are still part of their families, in memory and everyday actions. The Farrelly living room is covered in pictures charting Patrick’s few months. If a stranger asks Mary how many children she has and she says three, her kids will always contradict her and say there’s four, to include Niall.
The Rispins and the Farrellys have had each other through the cruelest of times. But they also had external support. The staff of Our Lady of Lourdes Hospital in Drogheda, particularly paediatrician Dr Siobhán Gormally, did everything they could for Patrick and Niall. The Jack and Jill Foundation supplied a home nurse, Cathy Keighery, whose help was invaluable. But S.O.F.T. Ireland was a godsend. The voluntary organisation, which works with families of children born with Edward’s Syndrome (Trisomy 18) and Patau’s Syndrome (Trisomy 13), provides support at prenatal diagnosis, during the child’s life and after its passing. For example, the group will pay for a nurse to come to the house one night a week to give the parents a good night’s sleep. Families get to share experiences and advice; siblings meet other kids their age who have lost brothers and sisters. Both the Farrellys and the Rispins would encourage any parent of a child with Edward’s or Patau’s Syndrome to get in touch with the organisation.
“I’d urge anybody who finds themselves in the same situation as either of us to contact SOFT and get talking to people,” says Patrick. “It’s just a great organization to be involved with and everybody is so much into worrying about the babies that are alive and feeling for them and thinking of ways to make things easier for them.”
For any parents who find themselves in that situation, Patrick Farrelly has only one piece of advice: just make the most of every single second you have with your baby. They did and don’t regret one moment of it.
“It was a brilliant time for us,” he says. “The hardest time was before he was born. That was the hardest time in my life and I suppose after he was born, then there was no bother. He took a lot of pressure off. You actually could see him. You knew what he looked like and he’d be in great form. You’d come in and he’d smile up at you – he had a great smile. “Every morning when you’d come in there’d be a rainbow in the room and it’d be shining on his forehead, just where he was. Nearly every day the rainbow would be somewhere in the room once he was there. I suppose since he died now, the rainbow has appeared several times, and when the kids come in and see a rainbow now, automatically it’s Patrick’s rainbow. It’s a great memory for them to have.”