The NICU experience for siblings - Amy and Alina's story

In June 2019, our daughter, Anela, arrived 15 weeks early while we were on holiday. All of a sudden, my husband and I had an extremely premature baby in intensive care, a three-year-old wondering where her holiday had gone, and nowhere to stay. We were thrown headlong into the world of neonatal intensive care, a world of which we'd had no prior knowledge or experience. It was the toughest time of our lives, as I'm sure many families would agree, whether your baby stays one day or one year in NICU.

We tried to shield our then 3-year-old, Alina, from the daily emotional rollercoaster we were experiencing, but she picked up on far more than we appreciated, often coming out with statements that really concerned us. She once turned to me during a very tricky patch and said, 'mum, don't worry because I've taken all the sadness that you and dad are feeling into my heart so that you don't have to feel it anymore'. We had never said we were sad and certainly hadn't suggested she carry that sadness for us, so that was totally off her own bat. It troubled me that she felt responsible for dealing with such a heavy emotional weight. The extent of her anger also shocked and scared me. She kicked and scratched and pinched my mum daily, (she'd never done this before to anyone) I think because she was a safe person to do this to - she knew she wasn't going anywhere so could use her as a punch bag and still get a cuddle from her at the end of the day!

Even a year later she was still coming out with questions and remarks about the NICU journey that both surprised and worried us. She was desperately angry, sad at times, confused, frightened and worried it would happen all over again. Having never before spent a night away from me, she saw me rushed off in an ambulance, not to return home for the best part of 5 months (we stayed in various Ronald McDonald Houses in order to be near to baby Anela). Alina stayed with me for part of each week, but I was up on the ward for vast swathes of the day, and she was basically brought up by her granny for those 5 months. She lost her mum, albeit temporarily, suddenly had to deal with a scary medical world she'd never witnessed before, had to live away from home for 5 months and had to cope with a baby sister who she knew was very sick and very far from normal. It took its toll on her, as it did on all of us.

We encouraged her to talk to us about her thoughts and feelings, but she kept many of the raw emotions bottled up inside for a very long time, some because she couldn't articulate them, and others because she felt she shouldn't. It would have been so much easier for her if she'd been able to give voice to them sooner.

After a particularly tricky angry outburst, I asked Alina how she felt about using her experiences to make a book for other children with siblings in hospital. She jumped at the idea and has spent the last three months dictating the wording and drawing pictures to go with each section. I've done the editing and my husband, Alex, is working on the design, so it's a real family effort. We're hoping that reading the book and hearing what Alina felt may help children in similar situations to make sense of the anger, grief, fear and pain that they go through, and to normalise some of the thoughts that scare them.

The plan is to distribute a few copies to each NICU in the UK to keep on the ward, and also to make the book available to buy online. We're approaching a few agents to see if we can get it published so if anyone out there knows of an agent who might be interested, please get in touch!

We couldn't be more proud of Alina for the way she's handled the most challenging year of her little life. And now she's turning a hugely negative experience into what we hope will be an immensely positive outcome.