Our baby’s pneumothorax – Stephanie’s story

My daughter Evie arrived 8 weeks early completely by surprise. I had had an appointment with my midwife first thing that morning, because I had had pre-eclampsia when I was pregnant with my son four years before. Everything looked fine, so I drove straight into work. But as soon as I stepped out of my car, I felt an almighty gush of blood. Within an hour, Evie was born.

Luckily, the hospital was only five minutes away from where I worked. I managed to drive myself there which astonished everyone - the doctors and nurses couldn’t believe I had managed it. I wasn't actually in pain though and my waters hadn't broken. I just knew that I was bleeding and needed help.

The doctors explained they suspected I had a placental abruption and the baby needed to come straightaway. I had never been so scared but so calm at the same time in my life. As I lay on the hospital bed being prepped to go in for an emergency c-section all I could think was 'it's too early'. Thankfully, my husband made it just in time for the delivery!

I heard Evie cry once when she was born and then it went quiet. I had been warned that they would most likely need to take her straight to the SCBU (Special Care Baby Unit). So it was a few hours before I even got to see her.

Going back to the maternity ward without a baby after just giving birth was totally surreal. People were congratulating me but all I felt was hopelessness. She wasn't in my tummy where I could protect her anymore. I felt like she wasn't ready to come out and I worried that it was my body that had let her down.

Evie was put onto a CPAP machine to help her to breathe, and it seemed to be working until the following day, when the neonatal nurse told me that Evie was showing signs of struggling with her breathing. When I was back on the postnatal ward, I heard the phone at the desk ring and I instinctively knew it was about Evie. It was the SCBU asking me to go over straight away.

When I arrived, Evie was being resuscitated. She had stopped breathing. I will never forget waiting for the doctors to work on my baby girl while a lovely midwife comforted me. I fully expected them to come in and say that she hadn't made it. But my little fighter pulled through.

Her lung had collapsed, so she had to be ventilated and have a chest drain inserted. That meant she needed to be transferred to a different hospital 40 miles away as our local hospital couldn't provide the level of care she needed.

It was so difficult being in a strange hospital and being separated from my husband and four-year-old son. They were allowed to visit but it was too far for them to come every day. Visiting the unit made my son very tired for school the next day, so sometimes my husband would come on his own while my sister or parents would look after our little boy. I don’t know what I would have done without their help.

My son used to tell my husband he didn't want to visit the hospital to see Evie: he used to love the toy room they had but he really didn't enjoy sitting on the unit with us. We understood that because we kept having to tell him to be quiet and not run around, and that was hard for him. But the staff were always so lovely and attentive towards him, and on Christmas, they worked so hard to make the day special for all four of us.

It was like a different world being in the neonatal unit. I would sit with Evie for between 12 and 14 hours a day. I loved helping with Evie's cares as it made me feel like I was her mum and it gave me something to take my mind off what was happening. It actually felt like my whole day was filled to the brim because I kept myself busy doing her cares, being present for the ward round, and expressing milk.

At night, I would go back to the parents' accommodation and I wouldn’t recognise myself when I looked in the mirror. Once the tears started they wouldn’t stop.

The leaflets provided by Bliss that were left in the parents' room were a godsend during that difficult time. The medical information in them was really helpful but I most liked reading other people's stories. My husband enjoyed reading the bits for dads too and he took some home with him while I was away from home so he could still feel involved.

It took some time for Evie to recover from the pneumothorax and it took four attempts to clamp the chest drain before she was ready to be transferred back to our local hospital. Finally, after another three weeks in hospital, we got to bring our baby girl home on New Year's Day. She is truly incredible and we are all so proud of everything she overcame.