This time last year we may have been out of hospital, but we were in no mood to celebrate. It felt like at any moment the rug was going to be pulled from under our feet, scared that at any moment one of our twins would be rushed back to hospital.
This year, however, things are very different and we can’t wait! Our twins, Leighton and Lola, are thriving. It is almost impossible to think that just over a year ago both my babies were struggling for survival in a hospital miles away from home and we were reliant on The Sick Children’s Trust to keep us right there with them. We have been very lucky and the festive period seems like the right time to reflect on that.
I went into labour at 23 weeks, totally unexpected, and at the time I thought I was just under the weather. Not wanting to take any risks, my husband, Liam, took me to our local hospital in Southend-on-Sea for a check-up. As soon as we arrived and I was examined we knew something was seriously wrong. I was told I was in labour, given a steroid injection to help strengthen my babies’ lungs, magnesium for their brain development and transferred by ambulance to The Rosie Hospital in Cambridge.
Neither of us could have predicted that just five days later our twins would have arrived and been raced up to the neonatal intensive care unit (NICU) in a bid to save both their lives. All I remember is waking up two hours after giving birth, disorientated and panicked, and putting my hand on my stomach, which felt far too flat. Before I could recall what had happened I looked to the side of the bed and saw Liam slumped beside me with his face in his hands. It was at that point the terrifying reality that I had already given birth came flooding back.
When I saw my babies for the first time I burst into tears. I couldn’t cope. Their skin was translucent and they were both in sandwich bags to keep them warm, ventilated, and, as the doctors told us, unlikely to survive. Leighton weighed 1lb 6oz and Lola just 1lb 2oz. It was very hard for me to see the twins and I wasn’t able to stay long. I didn’t want to get attached to my babies as I thought I was going to lose them. Liam was amazing though, not once during our ordeal did his brave face slip and he went into autopilot straightaway, signing parental consent forms and taking care of me when all I could do was stare into space.
Fortunately, within hours of arriving in Cambridge, Liam had heard about Chestnut House, a ‘Home from Home’ run by a charity called The Sick Children’s Trust. He was told that when I was discharged, we would both be able to stay there, totally free of charge, just a two minute walk from NICU.
As we were shown around Chestnut House and the House Manager, Abi, explained about the charity and how they supported families like ours, a little bit of the despair I was feeling lifted. At least we wouldn’t have to worry about having to leave the hospital and travel back to Rochford every day, nor would we need to think about how we might afford what was to become a very long stay, three hours from home.
Both Leighton and Lola were very poorly and had to overcome many different obstacles during the first few months of their lives. The first major hurdle was getting them to breathe on their own. Both had patent ductus arteriosus (PDA), which meant that when they tried to take a breath their lungs would flood with blood due to an open heart valve and this put too much strain on their tiny hearts. Whilst Leighton’s PDA closed with medication and he was taken off the ventilator after three weeks, Lola wasn’t so fortunate and at six weeks old underwent an operation where a closure device was placed into her heart through a catheter, which successfully closed the PDA.
However, it was still touch and go. We overcame sepsis and E. coli scares those first few weeks, survived operations and battled serious respiratory issues. Looking back, I don’t know how we managed, but I remember talking to a new Mum in Chestnut House when the twins were three weeks old, who had a newborn premature baby in NICU, and telling her that she would get through this and that her baby was going to be alright. In that moment I thought about how much support I had received from families staying in the ‘Home from Home’ and the strength it had given me when I had felt so alone.
The staff in Chestnut House were so supportive. Whilst our family did their best to be there as much as they could, we were miles from home and sometimes it just wasn’t possible. When my Mum couldn’t be in the house with us I would sit and have a cup of tea in the kitchen with Abi instead, who became a surrogate parent. She would listen to how the twins were getting on and comfort me. The staff in Chestnut House also coordinated with the ward so they knew when we had been through a really tough day and would be there on hand ready to support us when we got back to the house. Both Liam and I felt emotionally held. Chestnut House was so much more than just somewhere to stay close to our babies.
We were always there for the twins and, even when we couldn’t hold them, we could touch them in their incubators and give them skin-to-skin contact, which helped us all to bond. Sometimes in the middle of the night when I couldn’t sleep I would go and read to them both so they knew I was right there. Never being further than a few minutes away also meant we could learn how to care for Leighton and Lola, give them their medication, and use the different equipment, which helped all of us with our recovery.
After three months in Cambridge the twins were well enough to be transferred to Southend University Hospital. Although it was closer to home and a massive step in the right direction, it was difficult saying goodbye to our Chestnut House family and to lose the comfort of the routine we had become so familiar with. However, a few months later we were allowed to take our babies home for the first time, which was terrifying, but it felt like a miracle. Through the tears and the heartache we had made it! Since then the twins have defied the doctors’ expectations and we couldn’t be more proud of them both. We were told Lola might not crawl, stand nor walk, but she has recently started walking around and holding onto things. Leighton’s development is exceeding our wildest dreams.
Whilst it has taken us a long time to heal, I feel like we are almost there and, with our imminent arrival, there is a lot to celebrate and be grateful for. Our Christmas will be filled with love, laughter and two very cheeky twins, but we will also spare a thought for all those families with seriously ill children in hospital and hope that they, like us, are fortunate enough to be supported by The Sick Children’s Trust.
Ruby Price, Leighton and Lola’s mum
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