Carol Heffernan, Emma’s mam, remembers her pregnancy and Emma’s birth:
“My pregnancy was fine. There were no alarm bells. I didn’t see anything out of the ordinary when she was born but Fergie did notice that her cry was very weak.”
Emma wasn’t sucking properly, her breathing was irregular and she wasn’t crying normally. It became clear she was having small seizures. Carol remembers her panic:
“I couldn’t stop crying. All I could say was ‘Please tell me she’s not going to die’. I had gone from complete happiness to emotional hell in a couple of days”.
The decision was quickly made to transfer Emma to a specialist hospital. Their first sight of Emma there was upsetting. She was in an incubator attached to tubes, leads and machines. A series of very difficult and invasive tests and investigations followed.
“Her poor little body was bruised from so many needles. All you want to do is protect your baby. It broke our hearts.”
Then they were given the worst news any parent could receive. Fergie recalls the moment:
“They said they didn’t know exactly what was wrong but it was ‘not compatible with life’. ‘Short life expectancy’. Phrases like that. It was like this bomb was dropped with no emotion and then we were left to cope.”
Emma was transferred to Temple Street and things were much better there.
“Everywhere we went the nurses were amazing. Giving great care. Giving us emotional support.”
Fergie explains that babies are born with three key abilities – to cry, to suck and to breathe and Emma’s brain was struggling with all three functions. They brought Emma back to their local hospital. But after a couple of weeks of 24/7 care in a hospital environment, they were at breaking point. They took Emma home.
Caring for Emma at home was an enormously demanding medical and physical challenge. It required round the clock care and attention to detail. They had to bring home an array of equipment and medications. And all the while, ‘normal’ life had to carry on for the Heffernans as well.
‘The bank doesn’t care how sick your child is – you still need to pay the mortgage.”
People rallied around. Carol and Fergie’s journey through unspeakable loss was filled with countless inspiring moments and acts of kindness. A positive turning point happened the day the Jack and Jill Foundation came into their lives.
“The nurses were so professional and so caring. They would do anything they could for you. It was like Emma’s last days were really valued.”
After just 16 weeks of life little Emma decided it was time to go. She was tired out. She passed away peacefully in the warm embrace of her loving family. Carol remarks:
“It was lovely that we had this special time to take care of her. But I really believe Emma was also taking care of us – preparing us for what was to happen.”
The Heffernans describe Emma’s funeral in images that would melt anyone’s heart. Sitting in the back of the car with her little casket on their lap. Fergie carrying Emma from the church to the graveyard. A dad holding his baby daughter for the last time.
Today, Emma’s story goes on. Fergie and Carol don’t want to forget, they want to remember. To celebrate the full person and personality that Emma was. They also have insightful views on the end-of-life journey for children and families.
Despite, at times along the way, receiving the most amazing care and understanding, they are constructively critical of a broken and sometimes insensitive system.
There were dark days when they were given personal and upsetting news in impersonal and public places. Other dismal moments when a little empathy would have helped them better understand. Cold occasions when Emma was dealt with more as a ‘case’ that can’t be helped rather than a vibrant and beautiful person with vital life still to live.
They didn’t know what palliative care was until they began to feel its benefit. Near the end, for them, good palliative care wasn’t about just pain control and medical care. It wasn’t about the individual bits. It was about how it all combines. The medical. The emotional. The spiritual. The care and sensitivity.
The best parts of Emma’s last weeks helped Carol and Fergie prepare. It allowed them make good decisions for Emma. It helped them say the important things to Emma they needed to say. It helped them say their goodbyes.
It helped Emma die well.
To this day it helps her big brother Billy as well– he looks up at the moon with a smile, he sings to her and says ‘Emma I love you’.