Our emergency transfer - Leila's story

Leila, Barry And Lilac's Story Hero

Born at 34 weeks, Leila's daughter Lilac was seriously ill and had to undergo an emergency transfer by ambulance to a hospital with an intensive care unit that could look after her. Here, Leila remembers Lilac's journey from incubator to being allowed home.

My husband Barry and I work together. One lunchtime during my 29th week of pregnancy, something wasn't quite right. We called and then went to our local maternity assessment unit to be checked.

I had premature rupture of the membranes. There was a good chance I would go into labour within 24 hours, so I was given steroids to mature our little girl’s lungs and kept in for observation. Thankfully she didn't make an appearance and I was discharged the next day, having tested positive for Group B strep, and I would then be monitored twice a week.

I was in good hands, but the next few weeks became an anxious waiting game. I felt relieved for every additional day of pregnancy we clocked up. Then, at 34 weeks and five days, my blood pressure meant I needed to be induced.

Soon after the process started, my contractions came thick and fast. Barry and I were relaxed enough to joke through early labour!

On 8 October 2014 Lilac Rose arrived. Before I had even laid eyes on her, she was whisked away to the special care baby unit (SCBU). I didn't get to see her when she was born, let alone hold her. All I had was a photo Barry managed to quickly take, but I didn’t really know what Lilac looked like - because of wires and gauze and eye coverings - until she was seven days old.

My instinct that something really wasn't right had me out of bed and hobbling down to SCBU within 30 minutes of Lilac being born, completely oblivious to what I would find.

Over the next 24 hours Lilac needed more and more support. The beep of the monitors was deafening, and the physical pain of looking at her through a glass incubator was like having my heart ripped out repeatedly. I cried more tears than I ever thought I had as Barry tried to be brave for my sake, although he couldn't hide the fear in his eyes.

We didn’t get to introduce Lilac to our families, or announce her birth to friends before we were told that she needed to be transferred to a hospital with an intensive care unit (NICU). They still hadn't pinpointed what was making Lilac so sick, but when it takes nearly two hours to prep a baby for transfer in an ambulance, you know it's serious.

On a stormy October night we were blue lighted across London. I can still feel the ache in my stomach from my sobs during that journey.

When we arrived on NICU the experience became a whole new level of terrifying. Lilac was by far the biggest baby on the unit, yet the sickest. We weren't able to stay with her, instead we had to make do with calling throughout the night for updates.

In our race to get to Lilac the next day, I refused to even wait for a lift. I ran up three flights of stairs. And fell. Barry put his arms around me and told me I needed to slow down. We had no idea what to expect, but nothing prepared us for being told that she was critical and we needed to take things hour by hour. I called my mum. All I could say was I didn't know if we would get to bring Lilac home.

Lilac had GBS sepsis, but was fighting with every little bone of her body. She was put into a state of paralysis so all she had to do was take all the treatments they offered her. She was attached to an oscillator so she vibrated all the time – for days she just lay there - and she inhaled nitric oxide.

Our world was washing hands, expressing milk that we didn't know Lilac would ever get to have and calling the hospital at night for updates. One day a nurse mentioned staying at the Ronald McDonald house. I crumbled. Did she think our being 30 minutes away from the hospital was too far because things were critical?

But Lilac was in the best hands, and after three days a consultant said that once babies begin to turn a corner, they do so remarkably quickly. She was right...

Barry and I would high-five one another each time Lilac's blood gases came back improved. Her decreasing levels of infection were the real big deal. When she came off the ventilator we took a picture of the 'please clean' sign and sent it to our families!

Seven days later Lilac was back in SCBU and we got to hold her for the first time. Every emotion of the past week melted away and we finally had the glow of new parents. She quickly became well enough to return to our local hospital. NO BLUE LIGHT REQUIRED. Then, at two weeks old, she left hospital with no need for extra oxygen support.

Adjusting to life back at home was strange. I became a control freak, reluctant to put Lilac down or share her with anyone. I wanted to make up for all the time I felt she’d been robbed of Mummy and Daddy cuddles.

Sometimes I slipped back to the dark days at the beginning of our NICU journey. I went through a period where I blamed myself. But then I found support groups and I found Bliss. I began to realise that other mums who had been through similar experiences also had these emotions. As soon as I could rationalise them, I began to heal.

Lilac is now 18 months old and brings us more joy than it’s possible to articulate. She is happy, healthy and always smiling. She is slightly delayed with some of her gross motor skills milestones, but we are working through them with the help of physiotherapy, and this is small fry compared to what she's already overcome. She is the strongest, most inspiring little person. We are so lucky to have her.

If you have been affected by any of the issues mentioned in this post and would like to access support like Leila, you can view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk