The day doctors told us our beautiful baby girl was going to die
Grieving parents Sharon and Brian tell Arlene Harris how LauraLynn House Hospice helped them through the worst agony parents could face
Sharon and Brian Thompson had always longed to be parents and after several failed pregnancies, the Donegal couple was overjoyed to welcome their daughter Victoria into the world on September 27, 2011.
But despite the fact that their little girl seemed in perfect health, nine months after she was born, their beloved daughter died in their arms.
"Because I had a few miscarriages and ectopic pregnancies, I was a bit worried about my precious bundle when I was expecting Victoria," says Sharon, a primary school teacher from Moville.
"I was extra careful with everything and when I got too tired, took some time off work to give the pregnancy a helping hand – but having said that, there were no complications and apart from the usual nausea, the nine months were pretty uneventful.
"And although it was hard going, the birth was the same – nothing out of the ordinary except a lot of effort and a gorgeous, dotey baby girl at the end of it."
Brian and Sharon brought their new baby home after a couple of days and for the first few months of her life, everything was wonderful.
"Victoria and I came home from Altnagelvin Hospital when she was a few days old and she was lavished with love and affection both from ourselves and everyone else who met her," recalls Sharon. "We live in a small town and the whole place was supportive and delighted for us.
"It never occurred to any of us that there might be something wrong with her but I do remember noticing that she seemed to feed very messily and was often quite irritable. Mind you, at her developmental checks, everything was pronounced normal and the teacher in me was mentally ticking off all the boxes – it didn't seem like there was anything to worry about."
But on New Year's Day 2012, Victoria was particularly unsettled. Although her parents put it down to a change of routine and surroundings, from that day onwards, she seemed to be completely out of sorts.
'We were at a family gathering on New Year's Day and Victoria seemed very irritable," says 38-year-old Sharon. "I thought it was because she was being passed around to different people and was used to being at home with me and Brian and the dogs – but she really seemed out of sorts.
"In the days that followed, she was irritable for no reason. I took her to the doctor who put it down to first-time-mother worries. But when it got to the stage that she wouldn't take her bottle, I really did begin to worry about her becoming dehydrated so we took her to Sligo Hospital where after various consultations, they couldn't find anything wrong.
"We knew she wasn't right as she was still refusing to feed so we asked to be referred to Crumlin Hospital where she underwent a series of tests and scans. Then the neurologist confirmed our worst fears – our baby was seriously ill."
The consultant at Crumlin hospital diagnosed Victoria with an extremely rare condition – leukodystrophy – which to her parents' horror had no cure or treatment. There was nothing they could do but try to minimise the pain their tiny baby was in 24 hours a day.
"When the neurologist told us the news, we were utterly devastated," says Sharon. "Her diagnosis was of a rare condition which left her with no insulation on her nerves so her whole system was exposed and sensitive to every little thing.
"Once we got over the initial shock, our instinct was to ask what the treatment was and how they were going to cure her – but we were told that there was nothing they could do.
"We were heartbroken. When we took her to hospital, it never occurred to me for a moment that no one could help my baby find some peace from the pain she was in.
"She was so tiny and helpless and it was horrendous having to watch her go through so much at such a young age. She cried constantly and only slept fitfully when she was either on very strong medication or was totally exhausted from it all. Her condition changed daily and affected every part of her body.
"We felt like our world had just come crashing in on us and had no idea what to do. But I think every parent knows that no matter what you are up against, you find a way to cope because all that matters is doing everything you can for your child.
"I couldn't get my head around the fact that I had given birth to a perfectly healthy baby and yet she was disappearing day by day. But there was no point in feeling sorry for ourselves and thinking about a future without our daughter because we had to make sure she got the best care possible for as long as she was with us."
At the end of February 2012, Sharon and Brian were told to prepare themselves for their baby's death. There was nothing more that could be done for her in hospital and they were encouraged to take Victoria home to Donegal.
But despite the fact that many people in the same situation do not want their final moments to take place in a hospital, the Thompson family felt overwhelmed by the enormity of the situation and couldn't bear the responsibility of ensuring their daughter was pain-free for her final days.
"Most parents would want to take their child home if they were dying, but we didn't feel that it was right for Victoria, because although we had loads of support from family and friends, there was no one available locally who was medically equipped to help us with her palliative care," Sharon says.
"A friend of mine told me about LauraLynn House so I rang to see if they had a place for her. I will be eternally grateful that I made that phone call because being accepted under the care of LauraLynn House made such a difference to our baby's last days.
"We discovered that she was born on the day that the hospice opened, which seemed pretty extraordinary and after the stress of the crowded hospitals, from the moment we walked in the door of the House, everything was amazing.
"The whole place was calm and reassuring and there was no fighting for services or doctor's time – everything happened as it should without any fuss or drama, so it meant that Brian and I could spend time with our daughter – just being her mum and dad. The three months we spent there helped us to make the memories which we will cherish forever.
"Victoria died on June 27, 2012, exactly nine months from the day she was born. She was the most cherished little girl you could imagine. Before she became ill, she smiled, giggled and cooed and had the cheekiest little smile. She was the prettiest little princess and was loved by so many people.
"She had the most amazing family – especially her auntie Aishling who visited us every day in Crumlin – our family and friends came to see her every weekend and did all they could for us.
"All the nurses who cared for Victoria were like her earthly warrior angels and the doctors (both in Crumlin and LauraLynn) helped keep her as peaceful as she could be – and for that we are eternally grateful.
"The support we have had along the way has been phenomenal. The funds raised for LauraLynn in Victoria's memory has been mounting up over the past few months and has reached €144,000 already.
'The support for the children's hospice is huge and there should be more centres around the country. Palliative care for children in Ireland needs to be a priority. Only one hospice in the entire country is something that must change and soon.
"Our baby has gone and we miss her every minute of every day. But we are grateful that she received so much love during her short time with us. I still feel that she is with us and every day something happens to remind me that she is thinking of us – I might be feeling really down and the phone will suddenly ring and someone will ask me out for a coffee.
"These are just little signs, but I know Victoria is still with us in spirit. She brought so much love and happiness into the world and she will never be forgotten."
Victoria's story can be seen in No Time to Die tonight on RTÉ One at 9.35pm