'SHE NEVER ONCE SAW RAIN\... HOW FAMILY MADE BABY VIOLET'S ELEVEN DAYS OF LIFE SO SPECIAL
VIOLET Murfin’s middle name Ellen means “bright shining light” and that is exactly how mum Sophie wants her daughter to be remembered.
Little Violet only lived for 11 days, but it didn’t stop her family being able to fit as much as possible into those precious days. And a lot of that was thanks to a dedicated team of medical staff at the hospital where she was born.
With their help, the newborn baby was able to get back to her Cwmbran home in time to meet her terminallyill grandmother Liena.
Now Sophie Murfin is telling their story as a way of not only thanking the hospital staff but to help other families who need palliative care for their children.
It had started as a normal pregnancy. Indeed Sophie clearly remembers the sonographer at the 12-week scan saying how nice it was to see such a “lovely healthy baby”. But during the routine 20-week scan a problem was identified with Violet’s heart.
The following day Sophie was sent to see a specialist at St Michael’s Hospital in Bristol, where Violet was diagnosed with hypoplastic left heart syndrome – a condition that meant the left side of her heart hadn’t developed properly.
She was told the devastating news that when her daughter was born noone could predict her life expectancy, but it was only likely that she would live for a few hours or weeks.
Sophie, 27, said: “I was having the 20-week scan and there was just silence in the room.
“I knew there was something wrong and they admitted that they had spotted something and we were referred to specialists in Bristol.
“When we went there I was taken into a room with a box of tissues but we met some amazing staff at the hospital who were fantastic. I was assured that the condition wouldn’t be painful and she would know nothing different. They said she was blissfully unaware and there was a nurse who sat with me for hours explaining everything so clearly and answering all my questions.
“It was still scary, and I found that there were very few palliative stories shared by parents – but no-one said how truly wonderful the time with her would be.”
Sophie described how she was encouraged to name her baby and to write a list of things she wanted to do during the pregnancy.
“I didn’t realise the importance or significance of this but by referring to her by name the team showed us that, to them, we mattered,” she said.
“I still wanted to enjoy my pregnancy, I was still going to be a mum, and they really encouraged me to make the most of the time. I had to accept that Violet was never going to grow up, but I needed her to have a purpose.”
A few weeks before the scan the family had received more bad news when Sophie’s grandmother was diagnosed with terminal cancer and only given a few months to live. It was unlikely she would survive until Violet’s due date in May.
Sophie said: “With the help of the cardiology team in St Michael’s, plans were made. I’m so grateful to our nurse, Jess, for keeping me sane. Together we decided that I should write a bucket list and the team would help me to fulfil it. For now, though, I was going to enjoy my pregnancy and they would monitor Violet’s condition.”
An induction was planned so the teams were prepared for the birth and Sophie wouldn’t end up giving birth on the side of the road between Cwmbran and Bristol.
“We didn’t really know what to expect when she was born but I was prepared for the worst scenarios. I accepted that she may be born blue and quiet but I really hoped that this wouldn’t be the case,” said Sophie.
“What I didn’t expect her to be born on a bank holiday in the middle of a pandemic.”
On Sunday, May 24, three days before the scheduled induction, Violet entered the world screaming away and a very healthy shade of pink.
An ECG confirmed the diagnosis but, other than her heart, Violet was completely perfect – no wires, medication, or machines were needed.
Sophie said: “We had skin to skin time and a camera was provided for us to take photos that were printed to take home for great-grandma to see.
“Violet’s condition meant that she could only travel home in an ambulance. Despite their best efforts they were so upset, as due to the bank holiday it was unlikely we would get home before Tuesday.
“Throughout the day we had regular checks from doctors, giving guidance to keep Violet calm and manage her condition, but she amazed everyone and was just like any healthy newborn.
“That evening I received the news I was waiting for – we were going home.
A team had volunteered their time to make sure that we could get home in time. I can clearly remember the look on the midwife’s face – the PPE couldn’t hide the glimmer in her eyes.
“It was obvious that she was beaming and completely over the moon.”
On the Monday morning Sophie and Violet had a final check-up from the medical team. Violet was bundled up into what Sophie described as a baby bobsled and put in the back of the ambulance. She couldn’t go in a car as Violet had to be lying down flat for the journey.
She said: “The entire team had volunteered to get us home to south Wales – I couldn’t believe it, their kindness was humbling. Against all the odds, during a pandemic, we managed to get baby Violet home to meet her great-grandma and have four generations at home under one roof. The minute we got through the door, I took Violet up to meet my grandmother. It was such a special moment.”
The family then set about making the most of their time with baby Violet.
Sophie said: “The time at home with Violet was wonderful. The sun shone every day of her life – she never saw rain. We managed an awful lot in 11 days. We were both christened in the garden, with family and friends on Zoom. Neighbours watched from a distance accompanied by a dog, two cats, and a hedgehog – it was like a real-life Disney film. We clapped for carers, went to the park, celebrated gran’s birthday, and had a photoshoot in the garden. Bucket list complete.”
Violet passed away peacefully in Sophie’s mother’s arms on Wednesday, June 3, just three hours after her great-grandmother had died.
Now Sophie is sharing Violet’s story to give comfort to other parents in a similar situation, while she is also raising money for team at the hospital that gave them so much love and support.
The proud mum said: “I’m sharing Violet’s story to give some comfort to other parents in this situation – palliative care for a baby can be simply wonderful. To say thank you to the staff at St Michael’s Hospital, I’m aiming to raise as much money as I can so that they can continue to help other babies like Violet and support families like ours. It is how grateful we are for what they did for us. Their selfless actions, reassurance and kindness gave us the most precious gift – time.”
She added: “Thanks to the help of the team at Bristol, we were able to be together, as a family, at home.
“I was determined that Violet’s life would have a purpose and be filled with love. I truly believe that Violet was loaned to us to teach us a lesson, to show us to look for the good things in ourselves and to see the kindness of people around us. I wouldn’t change a single thing about our story, but I wish we could go back to page one and do it all over again.”