“You aren't responsible for your baby’s early arrival” – Sophie's Story

I went into labour very unexpectedly at 35 weeks. I remember finishing work and feeling a lot of pain but thinking it was normal after being on my feet all day. I was very uncomfortable overnight and when I woke up on the Saturday before my son was born I was bleeding and having contractions.

I rushed to the MFAU and had observations and a scan done. Everything looked alright at that point but I was then admitted to the hospital, so they could keep an eye on me.

I had taken a video of the observations being done, so I could show my twin sister, Charlie, who is an Obs and Gynae registrar. I was all alone, as Charlie lives out of London and my parents were away on holiday. The nurses told me not to worry. I had a urine infection and an irritable uterus. That it didn't mean that the baby was coming. I told my sister not to rush down. However, after seeing the observations, Charlie told me she was coming down to London on the train right then.

It was at that point I started to worry. I was very scared – I was completely alone and not at all prepared for the situation that unfolded over the next few days.

My son, Peter Charlie Johnson, was born five weeks early via emergency C-section at 4.44pm on Monday the 22nd of May 2023, at University College London Hospital.

Although the team seemed to have few worries about Peter's health before the C-section, unfortunately when he was born he wasn't breathing and had to be resuscitated. Peter was also unusually big for 35 weeks weighing 7.5lbs. Charlie, on the other hand, was very worried about Peter from the minute she saw the video of my observations. She kept face magnificently in front of me so as not to worry me further but I found out after how worried she was for us both.

I went into that C-section thinking I'd be holding a healthy baby boy after it – albeit a little early but he'd be OK. I hadn't prepared myself at all that anything could go wrong as I was so close to his due date. I didn't end up meeting my son until just before midnight which was nearly seven hours after his birth. I could only hold his hand through the incubator and then I had to leave him.

Peter was born and started on High Flow Oxygen once he had been resuscitated. He then deteriorated and had to be put on a ventilator. He also needed antibiotics for an infection and light therapy for jaundice.

In the NICU, Peter was so well cared for but I really struggled. He was so much bigger than the micro preemies he was sharing a room with and I almost felt like a fraud being there. I found it incredibly difficult to leave him after our visits. But then I also found it difficult sitting by his bedside not being able to hold him and watching him struggle. 

I hadn't really processed his arrival at all as it felt like one minute I was coming to the end of a full week of work as a teacher looking forward to a restful weekend, and

the next minute I was in labour and Peter was on his way.  I thought I still had so much time to prepare.

Going back to the ward after visiting Peter was so horrendously hard. Being in such close contact with all the other mums, who had their healthy babies with them, was very difficult for me. With just a curtain separating us and having no privacy meant I spent the first day or so after Peter came crying quietly, so as not to affect the happiness of the new mums around me.

I was grieving the planned and calm arrival that I had envisioned for my birth story – the arrival that Peter should have had.  I was grieving the fact that I couldn't hold him for the first five days of his life because he was so sick.  I was grieving that I couldn't breastfeed him like I had wanted to, as he was being tube fed. Bottle feeding and formula hadn't even been something I considered for our journey at all and I found that very difficult to come to terms with.

I just kept thinking ‘this isn't how it was meant to be’ and feeling so terribly guilty and sad that is how it had turned out.

I hadn't heard of Bliss when I was going through Peter's early arrival but I really wish I had. Reading the stories of the other babies on the wall at the NICU gave me a lot of hope that everything would be OK. Some of those premature babies had much harder fights for survival than Peter but they had made it through.

Peter and I recently did the Bliss Little Lights London walk. We met many other parents and carers who had been in our shoes or even heavier ones. And everyone was so welcoming, so interested in our story, and so happy to see how healthy Peter is now.

I didn't receive any emotional or mental health support while on the unit, other than the amazing nurses who looked after my son and the support of my twin sister (who was my birth partner) and parents who were the only other two people allowed to visit Peter. They all really looked after me.

There was also a receptionist at the NICU called Rosemary. She tried to make me smile every time I saw her. She truly was a beacon of light, in what was otherwise a dark time for us as a family. When we left UCLH, as Peter was being transferred to the SCBU at the Royal Free, I remember reaching over the desk to give Rosemary the biggest hug. Thanking her for making my day that little bit brighter every time I walked onto the unit to visit Peter.  

My advice to any parents going through something similar would be to take each day as it comes – or even each minute or hour if the day seems too long. Cherish every moment, no matter how small.

Remember to take care of yourself or to let someone else take good care of you if you can't yourself. Get plenty of rest and have family or friends bring you good food to eat and snacks you like, so you can pick at them, as I never felt hungry with the worry and stress – I had to keep being reminded to eat.

Remember that your baby is in the best possible hands, and the NICU staff are highly trained and experienced.

Join a support group. The groups can provide you with information and support from other parents who have been through similar experiences. I wish I had, as I felt quite isolated on the NICU. It would have been good to speak with other parents of late onset premature babies.

The most important thing to remember is that you aren't responsible for your baby’s early arrival. However, that is a very difficult fact to come to terms with as I blamed myself and I struggled with that thought for a long time.

Peter is nearly eighteen months old now. He is a happy, healthy and confident little boy. He goes to nursery and has lots of friends. He is full of joy and smiles all the time.

Other than some developmental delays, such as not sitting up or walking at the expected time and not really saying many words, Peter's start in life doesn't seem to have affected him at all.

Peter loves to dance. He enjoys music and playing on his mini guitar. He adores animals and loves passing dogs on the street, for a pat and a babble. Peter's favourite food is noodles and his favourite thing to do is pop bubbles.

Nearly two years ago, Peter's early arrival surprised us all. Though the beginning was uncertain, his strength and resilience since the start, has amazed me every day and continues to grow now.

The birth of my son, though it was frightening, has profoundly shaped me as a mother. That experience made me stronger and showed me how strong he is and I'm very excited for Peter’s future.

I am so grateful for the journey we've shared so far, even though it hasn't been easy – but the best adventures never are.