In early 2012, Brian and Sharon Thompson were told their only and beautiful daughter, Victoria, was going to die. But as well as coping with that, they also began to realise they would have to fight to secure the best end-of-life care for her.
Victoria arrived into this world on September 27th, 2011. Despite some difficulties at birth, Brian and Sharon took a healthy baby home. She was bursting with personality, she slept well, giggled and guzzled her bottle. They were a family woven tightly together by the golden thread of love that a special, new baby brings.
After a few months, things slowly began to change for Victoria. There were sudden moments of distress and constant crying. It was clear that something was wrong as Victoria flatly refused to take her bottle.
Even in hospital, Brian and Sharon found that they still had to fight for their baby. They had to demand answers – to get the professionals to really examine what was happening with their daughter as a person, not just as a patient.
It was the nurses who became their allies and encouraged them to make demands for Victoria. Sharon described the nurses they encountered all through their journey as ‘earthly warrior angels’.
Victoria was transferred to Crumlin Children’s Hospital.
“We met a brilliant Neurology team. We knew right away they’d do their best for Victoria. We were still in hell. We didn’t know what was wrong.”
Weeks passed and the news they never wanted to hear came:
Victoria had an incurable, untreatable rare condition which left her in constant and severe pain.
“Victoria’s nerve endings were un-insulated. They were raw. She also had horrendous symptoms. Our first question was ‘how do you fix it?’ Then you’re told– it can’t be fixed.”
Amidst the tears and trauma, there were moments of great joy. One such joyous moment was when LauraLynn, Ireland’s only Children’s Hospice, came into their lives. LauraLynn allowed the Thompsons to deliver on a sacred promise – to give Victoria the best life – and the best end-of-life – she could possibly have.
“It seemed to us that once it became clear that Victoria wasn’t going to be cured, the system was programmed to get her out of hospital and back to home. Whether that was the best thing for her or not, seemed irrelevant. Most parents given a choice would want their child to die in the comfort of home, among the people who love them. But if that’s not a viable option for the child, what happens?”
Brian and Sharon felt deeply that dying at home wasn’t the best or right thing for Victoria. She needed precision pain control, complicated medication and 24/7 care – things they weren’t qualified to give her.
“It’s as if the unspoken mantra is - ‘good parents cope’. However, the message I was getting from Victoria was ‘dying at home isn’t the best thing for me – I need somewhere special’. We had reluctantly agreed to bring Victoria back to a hospital closer to home. It was a disaster. Victoria was in even more distress. We were at our wits end. Friends had found LauraLynn online. I rang and asked if they could help us.”
The answer couldn’t have been more clear, generous and reassuring.
‘LauraLynn was made for children like Victoria. We’re here for as long as she needs us.’
For Sharon and Brian, the safety and beauty of LauraLynn was wonderful. The physical environment was modern, spacious, calm and bright. They speak emotionally about the experience.
“Every professional has time to talk to you, to sit with you. Everyone is willing to do whatever it takes. It was hard to fathom why it’s the only children’s hospice. We were allowed to be Victoria’s parents. We could relax a little knowing her needs were being met. Victoria was home.”
Through the activities and care in LauraLynn, Victoria’s family made memories, until it was her time to leave them:
“Victoria waited for the day of her nine-month birthday to die. Nine months inside, nine months in the outside world. When she felt we were as ready as we could be, she moved on peacefully that night, knowing we were with her.”
“I think children’s palliative care needs strong voices. Parents should be able to give children the best, especially children at the end of life. A society should look after its dying children.”
Sharon is philosophical about the future:
“Despite our grief and missing her always, Victoria gives us a sense of peace and purpose when there is none. Also a sense of love and joy we didn’t know was there. We are so besotted with her and her strength. Her patience and resolve were huge.”
Brian and Sharon have managed to move forward. Along with some incredible friends, family members and strangers, they’ve raised over €210,000 for LauraLynn.
Victoria’s magical messages have spread far and wide. They have inspired, soothed, caused tears and laughter. The money raised will help families receive the extraordinary consolation and positive benefits of specialised, quality palliative care.
What a beautiful way to honour Victoria’s memory.