I was pregnant in 2012/13, it was low risk and I was a first time mum. I had some experience with premature birth as my little brother was born at 26 weeks and had long standing complications from this for life. Sadly this was cut short and he died when he was 5 years old. I had no complications during my pregnancy and had a lovely experience but unfortunately it ended at 26 weeks. I woke up on the morning before I gave birth experiencing what I assumed were contractions, my midwife hasn’t yet discussed labour and birth in my appointments, so I called 111 to check. I attended my local hospital and wasn’t met with a friendly welcome and was told to go home as this was probably Braxton Hicks. I insisted on staying and good job, as when I was finally seen by a Consultant (3 hours later), I was already 3cm with bulging forewaters.

I had raised concerns regarding premature labour due to my brothers history but I was told not to worry as it was unlikely to affect my own pregnancy. It wasn’t until I presented in labour at 26 weeks that I then had a team from NICU discuss what would happen in labour, birth and beyond.

I was terrified our son would have the same complications as my brother. I was scared how my mother would feel, reliving such a similar situation. My husband was completely shell shocked and I think I went into practical mode; ensuring he called both our places of work, arranged for our dog to go to kennels etc. I started to feel disconnected to my baby as I already had the assumption he wouldn’t live, just as I had seen with my brother. I think this was a type of self preservation. 

I was given steroids for lung maturity and magnesium sulphate to protect his brain, but I was processing to quickly to try and prolong his birth. After he was born, I was able to have a brief cuddle as he was resuscitated before he went to NICU. The hospital where I gave birth was currently running a study to discuss a delivery room cuddle vs breastfeeding success in preterm birth. After he was take to NICU, I was encouraged to express. I couldn’t see him for 24 hours due to his condition, but once stable, my husband and I were able to see him. My labour midwife treated me with such kindness but without making it a big thing, she gave me the courage that perhaps things would be OK. 

We spent 3 months in NICU, He was treated for a PDA, sepsis and an undescended testicle which did need operating on when he was 13 months old. At the time, I was very practical. I would travel in and attend every day for 10 – 12 hours, as I had self discharged on day two after he was born due to terrible hospital phobia.

I spent a lot of my time expressing, I saw this as the one thing I could provide for my baby. It was incredibly lonely and scary, none of my friends could comprehend what it was like and it felt very isolating. Thank goodness for the wonderful NICU staff who looked after us. I also looked into what I could do to support other families who experienced preterm birth, probably as a distraction at the time. 

The NICE nurses were incredible, we still stay in touch with them now. They were our rock. Our son’s assigned consultant was also wonderful and would answer any question. Our families were there always, despite it being incredibly emotional for them too.

We didn’t receive a follow up after our pregnancy to provide answers or an explanation as to why I went into premature labour and as a result we have never had any other children. The first few years following were very tough, I constantly felt on edge about my son’s health and I became quite over protective. 

The experience made me leave my career I was in at the time, retrain and become a midwife! I received such amazing care that it inspired me. I also received some not so good care, which equally inspired me to become a midwife and do better. I plan to keep learning and fight for a NICU specialist midwife at my Trust to help support families who experience preterm birth. 

If I could offer myself some kind words or advice looking back, it would be, “It’s not your fault”. 

I’m sharing my story because preterm birth affects over 58,000 families every year and we need to keep this discussion going. We need to get health professionals on board with recognising preterm labour risks, we need to be taking women seriously when they say something just doesn’t feel right. I also wanted to share that despite a very scary situation, there was some light in that it inspired me to change my whole career and now I do something I absolutely love and feel can make a difference.