Some parents don’t get a whole lifetime with their child. Sophie only had 11 days.
During a 20 week scan a problem was detected with Violet’s heart. She was quickly diagnosed with Hypoplastic Left Heart Syndrome, a condition that meant the left side of her heart hadn’t developed properly. No one could predict her life expectancy but Sophie was assured that the condition wouldn’t be painful and that she wouldn’t know any different: “It was a very scary time for me.”
On top of Violet’s devastating diagnosis, the family also received the news that Sophie’s Gran was living with terminal cancer and may not survive to meet Violet: “We all lived together as one big family so it was so important to us that my Gran met my little girl.”
Sophie attended many appointments with the fetal medicine, cardiology, obstetrics, NICU and palliative care teams. She had regular midwife visits, phone calls and emails with medical teams. Life was very busy: “We were all as determined to get Violet home to meet her Great-Gran.”
A safe arrival
When Violet was born in the middle of the pandemic on a bank holiday, trying to get her home in time seemed impossible. “I didn’t expect her to be born when she was, but fast forward to Sunday 24 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.”
Remarkably that evening the hospital were able to transfer Violet and Sophie home via ambulance.
11 days together
Mum and baby soon settled into normal family life: “She was just like any other baby, crying, eating sleeping. 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; we clapped for carers, went to the park, celebrated Gran’s birthday and had a photoshoot in the garden. Bucket list complete.”
Violet died in my arms
Baby Violet died at 11 days old, in her Mum’s arms, with a special piece of music playing in the background that music teacher Sophie had always listened to while she was pregnant. Shortly before Violet died her eyes had changed from baby blue to brown: “She died with my eyes,” said her Mum. “She just fell asleep in my arms, without any pain.”
Following Violet’s death, Sophie’s world suddenly became very quiet: “I found that I had a lot of support throughout my pregnancy, before she was born, during labour and when she came home. There were so many appointments. But as soon as she died that stopped. It fell silent. We had numbers to contact, but I didn’t know what to say.”
Friends who didn’t know how to talk to Sophie left her alone, making her feel even lonelier.
“People are so scared and don’t want to say the wrong thing. But I find it better if people say the wrong thing, rather than nothing at all.”Sophie, Violet's Mum
Until one day she received a call from Together for Short Lives, to let her know she would soon receive a £300 grant from The Butterfly Fund.
“I wasn’t working at the time, I am self-employed and was on a maternity allowance. I thought I would have work to come back to after my maternity leave but because of the pandemic, there wasn’t work to come back to. On top of that there was the worry about funeral expenses.”
Sophie used the money to buy Violet a special casket for her funeral and a wooden plaque for Violet that’s in a shelter overlooking a beautiful meadow. “We can go and visit, walk and remember her. It’s not a sad place. It’s beautiful.”
But most importantly Sophie says that the phone call from Together for Short Lives was a moment of relief, to know that there was somebody out there thinking about Violet when it seemed like the whole world had gone quiet: “When we had the call about the Butterfly Fund, the lady was on the phone for a while – it was so nice to know that there was somebody there, that the outside the world was still ticking along. I wish we could see your faces to say thank you.”
Help grieving parents feel less alone
When Violet died nobody knew what to say, or how to help, and so she found herself all alone. Sophie’s pregnancy was filled with appointments, tests, medical visits, phone calls and emails. But now, the phone was silent. Until out of the blue she received a call to let her know that she wasn’t alone. Together for Short Lives were there to offer a listening ear and a special financial gift from the Butterfly Fund. A £300 grant that Sophie spent on a special casket for Violet and memorial plaque where she sits on a bench and remembers Violet’s beautiful brown eyes and baby soft skin.
With your £20 donation today you can reach out to a grieving parents so they don’t feel alone after the loss of a child.