Jo’s Story

The birth of your child should be a wonderful moment to remember. Yes most women say it was horrific but that at that moment when you hold your baby for the first time, all is forgotten. When you give birth to a tiny 1lb 7oz baby there is no magical moment. I had less than 2 days to come to terms with the fact I was going to deliver my baby before I’d even reached the third trimester. I hadn’t had antenatal classes, if it weren’t for my love of “One Born Every Minute” I wouldn’t have had a clue how to push a baby out. Just writing this now my chest is tight and my mind is trying not to remember.

On 9th October 2017 I delivered our daughter Jessica, at 25+2 weeks gestation, despite every part of me wanting not to push and to keep her safe inside me. My first glimpse of her was as she was wheeled past the end of my bed. All I could see were tubes and wires but amongst it all, inside a Tesco freezer bag, was my baby. I was taken down to the ward and placed in a side room and left there. Hours passed without us knowing what was happening to our baby. Finally nearly 8 hours later we got to say hello. She was so tiny, her hand barely covered my thumb nail. She was hooked up to lots of machines, her skin was red and see through. “I’m so sorry baby” was all I could manage to whisper. We had a few minutes with her before saying good bye. She was then transferred from Lincoln to Nottingham City Hospital, the first journey of her life was with strangers. I left the hospital a few hours later with no baby, I didn’t even know if she was alive. I lay that night clutching my empty womb, sobbing into my pillow. It was 8:30 the following day before we saw her again, she’d survived the first 24hours but was still in a critical state.

I spent the next few days in some kind of fog, unable to grasp what had happened. Consumed with guilt, unable to look at myself in the mirror. We spent the next 5 months in various hospitals, learning how to change tiny nappies through port holes, feeding our baby through a tube, carrying out cares at set times and learning how to touch and wash her fragile skin without causing harm. Each hospital had different policies making moves traumatic. We’d just start to get comfortable then we’d be moved again. I’d always dreamed of breastfeeding so at the soonest opportunity I started expressing but my supply never came in. Sadly we never did establish breastfeeding. I expressed every two hours from 8am until midnight and then again at around 4am. No baby in arms snuggled in an arm chair, just a lonely walk down a dark corridor to attach myself to a cold machine.

NICU is not a place for bonding, I didn’t feel connected to her, I just felt like I had a duty of care to this baby that I’d failed. I didn’t feel like a mum. Mums shouldn’t have to comfort their babies through endless painful procedures, scans, x-rays, surgeries. And through it all is that echoing thought “it’s my fault she’s here, my fault she’s suffering”.

We made friends with other parents during our stay, it’s those friendships that get you through NICU. You celebrate your milestones with each other and you become part of each other’s stories. You look out for each others babies when the other has gone to lunch or to express, and you cry together on the hard days. They all went home before us, I was so pleased for them but each good bye broke me a little more. Jessica came home after 148 days but our journey was far from over. We left the hospital at 10:30pm with our 5 month old baby, an oxygen tank and shattered souls. We got home and sobbed.

Jessica suffered brain bleeds shortly after birth and developed hydrocephalus as a result, a condition where fluid builds up on the brain. Part of her brain was damaged and she also developed large cysts. She underwent surgery to insert a VP shunt, a device that drains the fluid artificially. Although life savers these devices can fail in many ways so we have had to educate ourselves and learn to watch for signs. In May 2018 we were back in hospital for more surgery to revise her shunt.

Life on the outside is scary, preemies are susceptible to germs due to their low immune systems and underdeveloped lungs. Even now, 18 months on, I struggle to let others hold or interact with Jessica for fear of her catching something and ending up back in hospital. My hands are so sore from constant washing and sanitizing. You isolate yourselves to protect your baby but sadly not everyone understands this and you find your friends slipping away. We do venture out more than we used to but our lives aren’t like others. Our days are filled with therapy sessions and consultant appointments, fear that today may be the day the shunt fails. If we go to a play park I have to fight back the tears, the fear that I’ll never see my daughter running and climbing with friends.

I’m not the person I used to be, nor am I the mother I thought I’d be. Jessica has her physical scars but the emotional scars of NICU run much deeper. I can’t look at a pregnant woman, I can’t watch tv shows about births, whenever I see someone announce a pregnancy it feels like I’ve been punched in the stomach. Certain things trigger flash backs to moments in hospital, the sights, the sounds, the smells. That overwhelming guilt is still there, I doubt it will ever go. You see things in NICU that can never leave you some horrific but some are true miracles. But it’s ok because I know I’m not the only person that feels this way. There’s a huge NICU community out there and so many organisations are starting to come together to help families like ours. Don’t suffer in silence, talk to someone, use your own experience to make a difference for future families.

This is the UK’s first neonatal awareness week, let’s make it count.