To the staff at St Michael’s Hospital (Bristol), to whom I’m so incredibly grateful, without your help, eleven days as a family at home would not have been possible. Thank you, in memory of Violet, a perfect baby girl and our bright shining light. Here is her story.

During the routine 20 week anomaly scan, a problem was identified with Violet’s heart. The following day we attended 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. When she was born she would follow a palliative pathway, hours or weeks, no one could predict her life expectancy. I was assured that the condition wouldn’t be painful and she would know nothing different. Scary for me though, as there were very few palliative stories shared by parents, but no one said how truly wonderful the time with her would be! 

She soon became Violet, a person in her own right. At the time 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. 

A few weeks earlier, her Great-Grandma (who also lived in the same household) received a terminal cancer diagnosis, no timeline was given but she was unlikely to survive until my due date in May.

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.

I had regular appointments with the fetal medicine, cardiology, obstetrics, NICU and palliative care teams, who were all as determined as I was to get Violet home to meet her Great-Grandma (bucket list points one and two). I was completely floored by their kindness.

An induction was planned, to prevent me from having a baby on the motorway and to ensure the teams were prepared. 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. 

I didn’t expect her to be born on a bank holiday in the middle of a pandemic but fast forward to Sunday 24th May, three days before my scheduled induction, Violet entered the world screaming away and was a very healthy shade of pink. An ECG confirmed the diagnosis, but other than her heart, she was completely perfect; no wires, medication or machines needed.

We were soon transferred to the ‘Lavender Suite’, more like a hotel than a hospital, and I’m so glad of this. We were under midwife care; a huge thank you to Emily, Anna and everyone who cared for us so well, fed us and popped in just because they wanted a cuddle! 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! 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 Monday morning I had a final check up from the medical team. Violet was bundled up into what can only be described as a baby bobsled and put in the back of the ambulance. 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 (couldn’t have predicted that one!) we managed to get baby Violet home to meet her Great-Grandma and have four generations at home under one roof! The time at home with Violet was wonderful; the sun shone every day of her life, she never once saw rain. We managed an awful lot in eleven 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 my arms on Wednesday 3rd June, just three hours after her Great-Grandma.

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!

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. There really isn’t an eloquent way to say how grateful we are for what they did for us; their selfless actions, reassurance and kindness, gave us the most precious gift; time. 

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