“Without Bliss’ informative website, Sam would've missed out on so much time with Orla” – Faith’s Story #NeonatalLeaveandPay

Our journey started at our 20-week scan when we were told our baby had Spina Bifida Myelomeningocele. We were given three options; continue with the pregnancy as normal and our daughter would have surgery to correct the defect within 24-hours of being born, opt for fetoscopic surgery at 26 weeks' gestation or, the option that was never really an option to us, terminate the pregnancy.  

We opted for fetoscopic surgery and at 26 weeks’ gestation, we trusted a group of medical professionals at King's College Hospital to remove my uterus, perform keyhole surgery on our baby to correct the defect and give her the chance of a better quality of life. The surgery could help improve the chances of our baby not being born physically and mentally disabled.  

19 days after surgery, on 25th June 2024, our beautiful 3lb 2oz Orla was born at 28+5 gestation. I had contracted multiple infections following the surgery and Orla was ready to meet us almost 12 weeks early!

Orla was born at Conquest Hospital in Hastings and six hours after being born, she was transferred to King's College Hospital NICU, where she stayed for four weeks.  

Being from Eastbourne, King's was very far from home, friends, and family but we were lucky to get a room at Ronald Mcdonald Camberwell — a minute’s walk from our baby girl. It wasn't home, but it was a huge help at such a difficult time. My partner, Sam, had to return to work after two weeks so NICU became an even more lonely place to be all day, everyday.  

I'd heard about Bliss through work, when reading through maternity support and again when we were on the NICU ward. I visited the Bliss website multiple times to seek advice from other families and mostly reassurance. Sam also visited the Bliss website and came across the new law coming into place in April 2025 around Neonatal Leave & Pay. Sam downloaded the form Bliss had for employer’s and forwarded onto his manager to see if his work could offer any support. Although the law hadn't come into place yet, Sam's work offered him additional paid time off while Orla was in NICU, allowing him to finish work early, take extra days off and shoot off whenever needed. This flexibility helped make a tough, lonely time for me, just that little bit easier. Sam's team gifted £200 to Bliss charity to show their love and support.  

After four weeks, Orla was transferred from King's to a more local hospital at Brighton Trevor Mann Unit for a further four weeks, before being moved to the Royal Alexandra Children's Hospital (Brighton) for 11 days before we finally got to go home and start life as a family – 69 days after Orla was born.  

Being in NICU had a huge impact on our mental health and well-being. We were both exhausted and missing home comforts. No one can prepare you for life in NICU – any beeping sound brought on sheer panic that something was wrong. You start to feel heartache for other families going through the same experience. You never forget the sounds and smells of the NICU ward. We were offered psychological support at both King's and Brighton if we ever needed to chat, which I accepted on a couple of occasions when we were in Brighton.  

I think our biggest challenge while Orla was in NICU was due to her Spina Bifida. All the neurological specialists were based at King's so when we were in Trevor Mann, we struggled to get quick answers to our questions. The nurses and doctors were great and tried their best to help, but most of the time it was down to us to contact King's. This added additional pressure and stress at an already hard time.  

I also struggled with the overwhelming guilt. I had the surgery to help give Orla a better quality of life but I wasn't able to protect/grow her until full term and now she was attached to multiple wires and tubes, each day she was okay was a huge relief. We struggled with comments made by others, such as ‘at least you got to meet your baby early’, which we know were never meant with any malice, but it's hard to find positivity in such a hard and dark time.  

My advice to other parents would be to take each day, or even each hour, as it comes. Every day you're one day closer to taking your baby home. And most importantly, don't be afraid to accept help – the NICU world isn't easy and we’re only human so do what's best for you. Remember to step away from the ward, even if it's just for a coffee or some fresh air. Utilise the resources around you, such as Bliss because without their informative website, Sam would've missed out on so much time with Orla!  

Orla is doing really well and it's hard to believe we will be celebrating her 1st birthday this month! We have endless appointments both locally and in London, and we don't yet know what the future holds for her with regards to mobility, but she is the happiest little girl and she brings so much light and love to our life on a daily basis.