People have been asked to pay their respects and blow kisses as a horse-drawn carriage takes three day old Hope-Rose to her final rest in Barnstaple tomorrow morning (Friday, April 26).
Parents Sophia Vanhecke and Ben Taylor from Wrafton are sharing their story to raise awareness of the neonatal unit at Derriford that fought to save her.
But they also believe she might still be alive if she had received the right care when she was born prematurely at Barnstaple A and E at 25 weeks and if the specialist team from Derriford had been alerted in time.
They say a consultant told them she would have had a 65 per cent chance or survival if the right equipment and specialist staff were available from the beginning.
The family are having a private funeral but have arranged for the cortege to make its way through Barnstaple town centre first.
The carriage bearing Hope-Rose will leave North Devon Crematorium at 8.30am and make its way over the Longbridge and through the Square, before turning around and heading back to the crematorium.
Sophia, aged 25, said: “Anyone that sees the hearse, please blow a kiss to her. At midday there will be a balloon release at The Cedars and anyone that wants to attend that is more than welcome, whether to release them together or bring your own balloon.”
Born in A&E
Hope-Rose was born in the A and E department of North Devon District Hospital in the early hours of April 6.
Sophia had been rushed in by ambulance after midnight but said initially paramedics told her she had an infection, even though she told them she needed to push and knew what that was like, since the couple already have two children, daughter Eden, four, and son Coen, two.
She said it seemed there was a break down in communications as she was taken to A and E instead of the labour ward.
Sophia said: “Eventually and obs and gynae doctor came to A and E and said 'she is about to deliver the baby'.
“I was in so much pain and they were trying to treat me for an infection. That was around 2.30am, when I had been there for an hour-and-a-half.”
Hope-Rose was born half an hour later, fully formed, but Sophia said she had to be resuscitated two or three times before she could be moved up to SCBU.
She said there was a lot of confusion and believes there was a delay in calling the specialist Derriford team, who had to travel up from Plymouth.
She said: “When they came in they were outstanding, they were straight on it. On the way to Plymouth they had to pull over once to resuscitate her.”
Initially called Hope, but changed to Hope-Rose in honour of a nurse who cared for her, the baby was stable for 24 hours but her condition deteriorated.
She had suffered brain damage and multiple bleeds and the family were advised if they wanted to christen her it would have to be quickly, so close family were called to the hospital for the ceremony.
Sophia said doctors gave them the option of continuing intensive care treatment, but said in the unlikely event she did survive she would be severely disabled and need 24/7 care.
The family decided to withdraw treatment apart from pain relief and Hope-Rose died cradled against her mother's chest on the evening of April 9.
Sophia said: “They took her ventilator out, she breathed on her own for 20 or 30 minutes and even then we had hope that she would be okay.
“I felt and saw her last breath at 6.59pm.
“Staff at Derriford were absolutely 100 per cent, they looked after her but they looked after us as well.
“We took the other two children to see her on the Wednesday after she died. That was probably one of the hardest decisions we had to make. Coen was too young to understand but we told Eden she was born very early and everyone did everything they could but she died.
“She came in and held her and said she wanted to go to the shops and buy her some clothing. That was nice but it was really hard to deal with.”
Looking for answers
Sophia said to a degree she blamed the initial care in North Devon for Hope-Rose's death, adding: “If they had listened to me when I told them I was in labour they could have got the Derriford team in time.
“My intentions are not to sue the NHS or get anyone sacked, but I want answers.
“With the neonatal team at Derriford, words can't describe what they have done for us or how grateful we are.”
In a statement on behalf of Northern Devon Healthcare NHS Trust, medical director Professor Adrian Harris said: “We would like to offer our sincere condolences to Sophia and Ben for the tragic loss of Hope-Rose.
“We are dedicated to providing safe, high-quality care to our patients with compassion, and as with any incident of this nature we will be conducting a full investigation to establish what happened and identify any learning that we need to act on.
“We will work with the family during the investigation and will share our full report with them.”