Why I joined a Little Lights walk - Michelle's story

Michelle's Story Hero

On 21 January I was 28 weeks pregnant. It was just a normal day. I woke up, went to work, went to my parent’s house for dinner and went to bed. Nothing extraordinary happened.

At 3.00am on 22 January everything changed. I woke up and I was in labour. By 7.00am we were at the hospital, I was fully dilated and had delivered a foot. By 7.12am I was in theatre and at 7.32 Ophelia was born, without a cry, weighing 2lb 11oz. I just laid there, too scared to ask if she was alive but at the same time thinking of all the stupid practical things that hadn't been arranged yet. After what felt like an eternity they told my husband, Trevor, that he could see her. He stepped away from his position by my head and went to meet his daughter. He came back to tell me she was a girl and she had lots of black hair, like I did when I was born.

Three hours later and Ophelia was stable and ready to be transferred to NICU in another hospital. There was no bed for me, so I had to stay at our local hospital. I hadn't seen her and the midwife told me I wouldn't be able to, as they wouldn't let me out of bed until 12 hours after the caesarean. I just burst into tears. All I could think was that if she didn't make it I would never have seen my daughter. I begged the midwife and they finally let me go to see her. When we went into SCBU people kept saying ‘congratulations,’ but it just felt so wrong. This wasn't what we had planned or what we had hoped for. I had no idea what was happening, what struggles she might face, when she might come home or if she would come home at all.

I was wheeled to her incubator and when I looked inside I could see a tiny hand poking out from beneath a pile of blood stained tissue. I was allowed to touch her hand and it was the softest, most fragile thing I've ever touched.

That was it. They had to get her ready for transfer and I had to go back to the postnatal ward. I told Trevor to go with her as I didn't want her to be on her own. He sent me photos throughout the day and I kept asking him questions that he just couldn’t answer.

I was discharged the next day and my Dad drove me into London so I could see Ophelia. I sobbed all day. I was tired and in pain but mainly I was scared and filled with guilt that I, the one person who was supposed to look after her for nine months, had failed to do the one thing she needed. I was supposed to protect her and now I was helpless. We just had to wait.

My parents came back to London to collect us and I told them all about their first grandchild, how perfect she was and how well she was doing. And then when we got home, I didn't want to talk. I didn't want to do anything except go to sleep so that I could go back to the hospital in the morning. That was our routine for the first two weeks of her life - wake up, shower, go to the hospital, go home, sleep. Of course there were a lot of tears in there, but there were also a lot of happy moments and a lot of photos!

After two weeks Ophelia was well enough to be transferred back to our local hospital. We had been working towards this since the moment she went to NICU and on 6 February she took one step closer to home. At first Ophelia seemed fine but by the evening she wasn't herself. They did blood tests and an x-ray and came to the conclusion that she had an infection, which they suspected was Necrotising Enterocolitis (NEC, a potentially fatal condition affecting the tissues of the intestine). They started treating her with three different antibiotics and all we could do was wait. She was floppy and just slept all the time; I didn't want to leave her side.

Now that we were back in SCBU, we were surrounded by lots of babies who were much bigger and much healthier than she was, even without the infection, and lots of mothers who were starting to breastfeed their babies and talking about when they'd go home. I tried to block it all out because at that moment I wasn't sure Ophelia would go home, but despite my best efforts I couldn't contain my tears and spent most of that weekend crying next to her incubator. Eventually the antibiotics took effect and she started to get better.

She was in SCBU for a further seven weeks and had more ups and downs along the way. She got bigger and stronger and she finally came home on 25 March - the day she was 37 weeks gestation and the day I should have started my maternity leave.

Ophelia's first year was a difficult one, as I struggled a lot with the guilt I felt and challenges that came with having a premature baby. I first heard about Bliss from the leaflets and posters in NICU. Bliss is one of those charities that you don't know about until you need their support because the thought of ever having a baby born premature or sick is terrifying. I was one of those people who assumed it would never be me, but that all changed the day Ophelia was born.

I decided to take part in last year’s Bliss Little Lights Walk in London, to try to make something good out of the difficult start Ophelia had and the traumatic year we’d experienced. When I told my friends and family what I was doing, lots of them decided to join me. A group of ten of us did the walk together last year and we managed to raise over £1,000.

Taking part in the Little Lights Walk is as much about raising awareness of Bliss as it is about raising money for them. If more people knew about prematurity, it would make it just that little bit easier to cope with if they were ever in that situation. If those people knew about Bliss then they would know that there's a massive community of NICU parents who know what it's like to be separated from their baby for days after birth and to leave them in the hospital every evening.

It's a whole community of parents who have held their baby’s hand and cried silent tears while the doctors perform procedures and it's a community of mums who hate night time expressing almost as much as they hate the expressing room. But mostly, this amazing community all know the strength, courage and determination that can come from someone so small, and that deserves all the acknowledgement in the world.

We'll be taking part in the walk again this year and, as she's now walking, Ophelia will hopefully be able to walk for some of it herself!

For more information about our Little Lights events, click here.