'It was sheer torture'- Mum who lost two precious children to a rare disorder
The Greene family lost two babies, Darragh and Ronan, to a rare disorder. Their mother Lucy tells Joy Orpen about the crucial advances in healthcare since Darragh's death, which allowed them to care for baby Ronan at home
Lucy Greene (37) certainly knows all about the agonies and ecstasies of life. And if there's one thing she has learned, it's this; sometimes you do need an angel to guide you through the turmoil.
Lucy, who grew up in England, was a frequent visitor to these shores, as she has a large extended family living here. So it wasn't a major culture shock for her when she decided to make Ireland her home in 2000. Seven years later, she married Joseph Greene, a young dairy farmer from Doonbeg, Co Clare, and they made their home in the west.
During their honeymoon in Australia, they were overjoyed to discover that Lucy was pregnant. However, soon after, she became ill and developed aches and pains and a high temperature; worryingly, a virus was suspected.
However, following a fairly normal pregnancy and the safe delivery of baby Darragh in October 2007, all seemed well, until a nurse noticed him twitch. Otherwise, he passed the relevant requirements, apart from a reluctance to feed. The following morning, when he was still not taking fluids, Darragh was put on a drip. It was then discovered that he was having seizures. Once infections and metabolic causes were ruled out, doctors ordered an MRI scan. "We couldn't believe this was happening to us," says Lucy. "We were already mad about Darragh."
The scan identified certain serious neurological abnormalities caused by irregular development during the embryonic stage. The prognosis was not promising. "We were told he would not live beyond the age of 20," explains Lucy, "and that he'd be blind, unable to communicate and wheelchair-bound. Until that moment, we'd thought we had a baby who, apart from having seizures, was a healthy little boy. We hadn't expected this. This was definitely the hardest day of my life."
Darragh was transferred from Limerick to Children's University Hospital, Temple Street, in Dublin, where consultants explained the ins and outs of his condition. The most urgent task was to get the seizures under control, and to establish a feeding pattern, given that Darragh's sucking ability was poor. "It would take ages for him to have a tiny feed, then he would have a seizure and it would all come back up," Lucy says.
Eventually, Darragh went home and, at last, they were together as a family. However, that joyful period ended when his problems worsened.
"It was heartbreaking, given his prognosis, but I tried to get on with things as best as I could," Lucy says. "So there I was, putting a child, who was having seizures, in a buggy. And sitting up all night trying to feed him and to stop him choking.
"Not only was he not holding his medication down, he couldn't keep food down, either. There seemed to be very little help available to us."
Not surprisingly, there were times when Lucy panicked, because Darragh was more ill than usual. So, having loaded the baby, his medication, nappies, buggy, and other paraphernalia into the car, she would embark on the long drive to Limerick. Once there, she would then have to search for parking, before making her way to A&E. Joseph would have to stay at home in order to look after the livestock.
"Every time, we saw a different doctor," Lucy explains. "They have certain protocols for treating seizures, so we would have to go through these from the beginning again, even though I already knew some were not appropriate for Darragh. Eventually a doctor would phone Temple Street and the meds would finally be adjusted."
Lucy says there was a lot of confusion around his complex care. So looking after this special little boy became a nightmare. "I believe he was often in pain and he was hungry much of the time," says Lucy.
When he was nearly six months old, Darragh was again admitted to hospital when his condition worsened. His parents were warned that his medication couldn't be increased any further. Finally, in April 2008, a police escort rushed Joseph from the farm to the hospital. And, at midnight, their little boy died in Lucy's arms.
"We buried him in Doonbeg," she says, with tears in her eyes.
Lucy says she and Joseph were delighted when their second son, Jacob, was born in 2009, followed two years later by his brother, Seamus. Both were perfectly healthy.
In December 2012, the boys were thrilled when baby Ronan was born. However, soon after his birth, Lucy noticed the infant twitch. "Did you see that?" she asked her husband. He said he had; the disappointment in his eyes clearly palpable.
"I began to recognise the subtle signs of a seizure," says Lucy. "It was sheer torture. I just couldn't face this again; not with two lads at home."
Nonetheless, Ronan was also diagnosed with similar neurological malformations.
However, this time around, things were very different. Now, children such as Ronan had access to palliative care teams, to make them as comfortable as possible.
The Greenes were introduced to Hilary Noonan, a children's outreach nurse, who was trained in the practice of palliative care. She was funded by the Irish Hospice Foundation and by the HSE.
Hilary immediately became Lucy and Joseph's first point of call. A meeting was arranged with those involved in Ronan's case. Two weeks later, Ronan went home.
In the meantime, Hilary ordered all the medication and equipment he would need, including pain relief, a feeding pump, and a suction machine. She was also in daily contact with the other professionals and responded rapidly to his ever-changing needs.
However, in spite of all their best efforts, less than three months after his birth, Ronan had a massive seizure, causing heart failure. He, too, died in his mother's arms.
Lucy says the fact that they were able to care for Ronan at home was hugely important, as it brought a sense of normality to family life.
"It took away a lot of the logistical pressure, and the stresses of divided loyalty and guilt, caused by hospitalisation," she explains.
"And, because Ronan was being properly cared for by the team, he was much more comfortable."
Every single night, Jacob and Seamus remember these two very precious babies in their prayers.
The Irish Hospice Foundation receives no core State funding and relies on donations for their many worthy projects, including the Children's Palliative Care Programme. For more information and to donate, see hospicefoundation.ie
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