​I remember the first night I stayed in Stevenson House I hardly slept. Knowing Isla was so close was comforting and I wanted to be with her all the time, but I also knew I needed to rest so I could be strong for my baby.

Just 24 weeks into my pregnancy, I went into premature labour. The longed for babies, that I had battled for four years to conceive, were on their way. Terrified, my partner, Mitchell, joined me in an ambulance to Basildon University Hospital where doctors immediately pumped me full of magnesium sulphate to try to halt the labour. They also gave me a steroid injection, which would improve the twins’ lung function and hopefully save their lives.

The neonatal team prepared us for the worst. Deep down I knew I was going to lose a baby, or even both. Despite their best efforts the labour couldn’t be stopped and, at 7.16pm on 20 January 2018, Esme Sârka Simons was stillborn weighing just 670g. She was the most beautiful and perfect little girl I had ever seen. 54 minutes later Isla Lenka Simons arrived weighing 655g and was immediately raced to the neonatal intensive care unit (NICU). Esme saved her sister’s life the night she was born. She planted herself in the birth canal before I got to the hospital and was given the drugs, which gave Isla time to absorb what had been administered.

Following the births, Esme was cleaned up, dressed and placed in a Moses basket. After taking a photo, I held my daughter and told her how proud I was of her for fighting to survive and for helping her sister to live. At midnight, we were told we could visit Isla on NICU and my first thoughts were who would stay with Esme. One of the midwives offered to sit and read to her whilst we were downstairs; it was such a beautiful gesture. Isla was quickly transferred to the Royal London Hospital for lifesaving treatment, which is where she would spend the next five months growing stronger, but before Mitchell and I went to join her, I held Esme for the last time. As I looked out of the window, with my firstborn child in my arms, it started to snow and I began to sing ‘Do You Want to Build a Snowman?’ from the film ‘Frozen’ to my baby. It was heart-breaking yet felt so beautiful.

Before we arrived in London we had received a call from the hospital to say that a charity called The Sick Children’s Trust might be able to provide us with somewhere to stay at Stevenson House. They explained this was free ‘Home from Home’ accommodation located just a few minutes’ walk from NICU where Isla was being treated. However, because there is so much demand for rooms in Stevenson House we had to commute for three days before the call came to say that a room had become available. Having already lost Esme, and with Isla hovering between life and death, both Mitchell and I found it almost impossible to leave the hospital and travel home each night. It was such a relief then when, overwhelmed, emotional, but very grateful, we moved into Stevenson House and I no longer needed to leave my baby alone in London every night to make the journey home.

It was such a reprieve to be able to go back to our private room in Stevenson House, which had a phone line direct to Isla’s ward. We could make ourselves a homemade meal in the kitchen and even watched a bit of TV when we needed to feel like our lives were not in pieces. Debs and Irma, the house staff at Stevenson House, were amazing and had a good relationship with Isla’s team on NICU. They knew when we needed a little bit of extra comfort after a difficult day on the ward. Also, being able to talk to other families in the sitting room, share experiences and comfort each other was what Mitchell and I needed. He doesn’t talk about his feelings as much as I do, but it definitely helped him to meet other dads in Stevenson House and he felt less alone as he began to open up to them.

Esme’s funeral was on 5 February and after that Mitchell and I made the decision to vacate our room at Stevenson House. Isla was doing well in NICU and, after everything we had been through, we were craving the comfort of our family, friends and pets back at home. I also knew that there was a waiting list for rooms in the ‘Home from Home’ and I wanted the room to go to a family who lived further away from the hospital. In hindsight, maybe we should have put ourselves first and stayed a little longer, but at the time it seemed like the right thing to do. At least I felt a little stronger, having been able to physically recover from the birth in Stevenson House.

Fast forward five months to 8 April and Isla was transferred back to Basildon where she was looked after by an amazing team we now consider extended family. On 7 July, at 138 days old, Isla graduated NICU and we were able to take her home with oxygen support. It was a miraculous day that I had never imagined would arrive.

Since being home we have been through more ups and downs. Because of her prematurity Isla still has some problems. She suffered a bleed on the brain at birth and has chronic lung disease, but amazingly is already oxygen free – a huge milestone. I am in awe of my amazing daughter! I was diagnosed with post-traumatic stress disorder, experiencing flashbacks of the day the girls were born and the tragedy of losing Esme. At times I have felt anxious with Isla because her start to life was so shaky, but we are getting there and Isla’s smile melts my fears away. Despite our traumatic journey together Mitchell and I are determined some good can emerge from our sorrow and we could not be prouder of Isla and how strong she has been.

We have channelled our grief and energy into helping others and set up a Facebook page and website page, called ‘Isla’s Journey’, to comfort and support parents of premature babies. We have also created various care packages to help parents with children in hospitals so that their focus can be on their babies and not the little things they need. We will carry on supporting The Sick Children’s Trust and are raising as much money and awareness as we can to help them continue their vital work.

Ashley Simons, Isla’s Mum.