25/04/2026
At just 17 weeks pregnant, our world came crushing down- our unborn baby has Spina Bifida. We had only heard of it before but didn't know what it meant. We felt very alone and isolated. We reached out to charities and other people, and spoke to many health professionals, but still, they could only tell us very limited information about our unborn baby.
At 27 weeks gestation, only 10 weeks to the day that our baby was diagnosed, we were operated on- to fix the lesion on her back while I was still pregnant with her.
The operation went well, although the recovery was quite tough on me- I wasn't allowed to do a lot and found a lot of new hobbies including knitting, sewing and other things. Exactly 4 weeks after surgery, my waters broke. I was devastated but remained very strong minded that baby would not be born yet. I stayed in and out of hospital, including our local one and a London one. After spending over 2 weeks in hospital, I was sent home. Less that 3 days later, I was in labour again and was blue lighted to London. Autumn was for at 4.28am on 11th October 2023 at 33+6 days gestation. She was perfect. We spent just under a month in the NICU in London while her lesion healed and she learnt to feed.
Fast forward to today, Autumn is the happiest, sassiest and most strong minded little girl. We have done physio every single day since she was 3 months old. She can walk independently with the help of some SMO's (orthotics that fit inside her shoes). She is catheterised during the day and night, although this sounds daunting, you do get used to it and Autumn doesn't know any different.
If I could go back 3 years to Autumn's diagnosis day or the dark weeks that followed, I would tell myself the following things-
- it isn't your fault. Stop beating yourself up and start being kind to yourself.
- keep researching and reaching out to people and charities.
- you're not going to have a medical problem, you're growing one of the strongest little girls in the world.
So if you're going through the diagnosis stage, do what you have to do to get through. But most of all, don't blame yourself. It's easy to get into a downward spiral and you loose sight of the important things.
