‘It looked like a little hamster with a hat on. But it wasn’t, it was her heart’

Vanellope’s parents describe ‘horrible’ eight months fearing they would lose their daughter

Photograph issued by University Hospitals of Leicester NHS Trust of Vanellope Hope Wilkins, who was born with an incredibly rare condition, Ectopia cordis, in which the heart grows on the outside of the body.

Photograph issued by University Hospitals of Leicester NHS Trust of Vanellope Hope Wilkins, who was born with an incredibly rare condition, Ectopia cordis, in which the heart grows on the outside of the body.

 

Vanellope’s parents have described the “horrible” eight months during which they feared they would lose their daughter.

She was given next to no chance of survival when she was diagnosed with ectopia cordis, a condition where the heart grows outside the body.

Speaking of when she first found out about the condition, the baby’s mother, Naomi Findlay, said: “I burst into tears. Because it was meant to just be a dating scan, we took the other kids with us. When we did the research, we just couldn’t physically look because the condition came with so many problems.

“All the way through it, it was ‘the chances of survival are next to none, the only option is to terminate, we can offer counselling’ and things like that. In the end I just said that termination is not an option for me, if it was to happen naturally then so be it.”

Describing the first moments after birth, 31-year-old Ms Findlay said: “I think from the epidural that’s when my head was spinning. I started to panic, I actually felt physically sick because I actually thought there was a big possibility I wouldn’t be able to see her or hear her or anything really. But when she came out and she came out crying that was it, the relief fell out of me.

“I felt guilty for thinking negative thoughts because here she is fighting and then there was I, about to give up. I’m glad I stuck to my guns not to terminate though, I’m so glad.”

Explaining how she felt two weeks on from the birth, she said: “I just want to climb into her cot and take her place, just to let her breathe a little bit. “Now, looking at her, I just want to pick her up and hold her close and I wouldn’t want to put her down. When my first lad (Caleb) saw her it knocked him for six because he was expecting us just to bring a little baby home.”

Vanellope’s father Dean Wilkins said: “We still didn’t know what we were looking at when we saw the scan. It looked like a little hamster with a hat on. But it wasn’t, it was her heart. We were told that our best bet was to terminate and my whole world just fell to bits.”

The 43-year-old said he had to leave the room after hearing the news and said the first scan was “all about termination”.

He said the hope of survival came as soon as he could see the baby moving. “When she starts moving her arms, you feel like ‘that’s a life in there, she is there’. I lost hope a few times, if she didn’t move I’d say ‘has she moved today?’ and then the next thing she’d suddenly move and you’d go ‘oh she’s heard me’. These past eight months have been horrible.”

The father-of-three said they were told the first 10 minutes after birth were crucial. “What they said is, when the baby is born, she has got to be able to breathe in our oxygen. Twenty minutes went by and she was still shouting her head off — it made us so joyful and teary.”

Speaking of his thoughts over two weeks after the birth, Mr Wilkins said: “The main thing for me is infection. “When we first came home to see the boys I rang up to check how she was and they said they thought she might have an infection. And that was it, I was gone, we had just left her. We came back and she was all swollen everywhere.”

Explaining why they chose the name Vanellope Hope, he said: “We ended up watching a film with the lads, Wreck-It Ralph, and there’s a little girl called Vanellope, known as the Glitch. “All the odds she was fighting and the fact she wanted to be a racer made me determined that’s what she would be called.”

Ms Findlay added: “Vanellope in the film is so stubborn and she turns into a princess at the end so it was so fitting. The Hope part is the fact that she has brought us hope, and my mum and dad, because even they as grandparents thought they would never get to see their granddaughter.”

Mr Wilkins said it also stood as a message of hope for everybody else. “Some mums still terminate and if we can get out there that there is a hope and that it can be done then it’s giving all those mums out there a chance. Even if years go by she will still be remembered as a reminder that there is that hope.”

– PA