“She was perfect”: New book shares story of miracle baby who defied doctors’ expectations and seeks to give hope to parents

Image credit: Deborah Manning via Her Story to Tell

A mum has recently launched a book that details the story of her infant daughter, Jovie, who defied doctor’s expectations after she was diagnosed with a life limiting condition and deemed “incompatible with life”. She hopes that sharing Jovie’s story will give hope to other parents facing the same situation.  

Deborah Manning and her husband Chris were told at her 12-week scan that their unborn child did not “have a face”. However, it wasn’t until her 20-week scan that they were told by doctors that their baby would unlikely survive birth.

Manning had already discussed with her husband that an abortion was not an option for them. "If she'd just taken a breath, that would have been a success story to me," she said. Whilst Manning said she felt “incredibly lucky” that she had received good care throughout the pregnancy, she also expressed how this care was unusual, where usually “termination is pushed on people.”

Jovie instead defied doctors’ expectations. She was born in March 2021. She was diagnosed with the severe brain condition holopronsencephaly, microcephaly, diabetes and epilepsy, but she lived for just over a year.

The Mannings founded Jovie’s Journey in memory of their daughter, a charity that seeks to provide support and hope, as well as offering “acts of kindness” and information to parents who have also have a child diagnosed with a life limiting condition, as they felt “people weren't getting the support they needed.”

Jovie "brought goodness with her from other people" and "we want to bring acts of kindness to other people", Manning told the BBC. "We always knew she was here for a purpose and it was our job to fulfil that purpose and now she's gone, it's still our job to fulfil that purpose."

Manning has now recently launched a book titled “Her Story To Tell” that details the first year of Jovie’s life, ending on her first birthday. It is available to buy on amazon and reached Amazon’s top bestseller within 48 hours of its release. She hopes that this will give hope to parents when receiving a life limiting diagnosis for their precious babies.

Last week, she interviewed with Vicky Wall from Every Life Counts on a live stream on Facebook, discussing further her purpose for her book.  

“It’s just so important to get the story out there, just to support other parents, and the more stories we can share of these incredible babies, the more chance we have to saving them and letting them fulfil their potential,” she said.

Manning also discusses how she hopes to use her book to reach out to and help doctors when they are to provide support for parents who have received a life limiting diagnosis for their child.

“It’s not about telling people you shouldn’t have a termination, yes that’s my view, but that isn’t the point of this book. It’s about supporting parents when they need it the most, and not giving a one-sided opinion,” she said.

Manning spoke about how she would often send photos of the good times with Jovie to her doctor, who in turn expressed his appreciation for. She explains how he only ever saw Jovie during the bad times, but through these photos he was able to see that she was enjoying life, and the family were enjoying having her.

“It’s been the hardest time of my life losing her, but I would do it all again,” Manning said. “I would not go back to the beginning and switch Jovie for a healthy baby. I just wouldn’t do it…because she was perfect”

“The fear of losing something is what makes you appreciate it the most, and I never ever appreciated my older children like I did her. Sadly, that comes as a cost of losing her, but it is definitely worth the price,” she added.

When discussing the limitations of children diagnosed with a disability, she said “I don’t like to say Jovie was disabled, because she wasn’t. It was the disability that made her so able; so able to share her story to the world.” 

“They’re disabled of some things, physically disabled, but they’re so able to do things those people running around the football pitch can’t do.”