World Prematurity Day takes place on Sunday 17 November and is a global movement by organisations across the world to raise awareness of premature birth and the impact it can have on families. The Sick Children’s Trust is joining the charity Bliss to ask families what they wish they’d known about having a premature baby to help others going through a similar experience. We talk to Emily Bridges, Dexter and Zachary’s mum, who was supported by The Sick Children’s Trust in one of its ‘Homes from Home’, Eckersley House, when her twin boys were rushed to Leeds Children’s Hospital after they were born at 27 weeks.
“I wish I’d known that premature labour presents itself differently.”
Our lives changed forever on 18 November 2018. While enjoying a quiet Sunday night, I went into labour at only 27 weeks and four days pregnant with our twin boys, Dexter and Zachary. As a first-time parent I didn’t know what to expect, apart from what I was told. Of course, when you’re pregnant no one wants to scare you but it would’ve been good to know that labour can be a constant pain, not just coming and going contractions. I had no expectation that labour could present itself in this way. Perhaps if I had, our outcome would’ve been different.
“I wish I’d known that things could get worse after the birth.”
When you’re being prepared to give birth, you’re warned about all the risks around pregnancy but once the baby arrives that’s the moment that everything should be OK. In our case it wasn’t and we were naïve. If we’d known about the risks in premature babies perhaps we would’ve felt more prepared? Dexter and Zachary were born on our bathroom floor at home delivered by my husband Max, who had to perform CPR on Zachary as he wasn’t breathing. It felt like everything was going in slow motion, and when the paramedics put us in the ambulances, we were under the illusion that the worst was over – we had help. But the worst wasn’t over. This was just the beginning. We found ourselves in a false sense of security. Our boys were receiving the country’s pinnacle care at Leeds Children’s Hospital, with the best doctors and nurses looking after them. But sadly, sometimes that’s just not enough.
“I wish I’d known that we were not alone.”
We were in the midst of a whirlwind with everything going at a million miles an hour. That first night in Leeds we were put up in a room by the hospital. We didn’t have a clue how long we would be in Leeds, would it be days or months? We were shown around a place called Eckersley House, run by The Sick Children’s Trust, which was beautiful and just a few minutes’ walk from our twins. It was so close and homely, but we worried about how we would be able to afford it. We were both on parental leave and knew our wages wouldn’t cover the cost of a hotel in the centre of Leeds, food and travel. It would’ve been such a comfort to know beforehand that support from The Sick Children’s Trust was available to us – a free resource – in case this happened. It would’ve lifted a lot of worry instantly, and it did when we found out about it. It became our safety net, knowing we didn’t have to travel every day or sleep in hospital chairs and were only ever minutes away. We stayed at Eckersley House for the entirety of Dexter’s time in Leeds and only came home once which was for Zachary’s funeral. To have the ability to do that was invaluable.
“I wish I’d known how much speaking to other people would help.”
At three days old, we received a call at Eckersley House to say that Zachary was struggling. A bleed on the brain meant that there was no chance he’d survive. These were the words that fill any parent with dread, but worse still the time we would have to spend with our son Zachary was ticking away fast. We cared for Zachary in the ways we were destined to, by bathing, changing and dressing him. While the hard working staff at the hospital were caring for our boys, Eckersley House and The Sick Children’s Trust gave us the gift of time, time not spent wasted travelling or stuck in traffic but instead it was spent where we needed to be, by the bedside of our sick twins. Sadly, after just three days and 17 hours of life, Zachary passed away peacefully in our arms.
Before Zachary passed away, we didn’t have the chance to talk to other families but afterwards when we were in a much more stable place we could. It comforted us, but we also felt we could give other families advice and help comfort them. We were among families who had babies that survived and others whose had passed away and we were in between those two groups and could relate to both. It was a huge help to us in coping with our loss and hope it was a help to others.
“I wish I known that although it’s daunting, there can be joy.”
World Prematurity Day takes place the day before Zachary and Dexter were born. It can be quite daunting looking back and thinking of the year that we’ve had. We want to celebrate everything that Dexter has done. He has been the lifeline for me and my husband Max. We don’t want his birthday to be overhung by sadness but will have a day of remembrance for Zachary on the anniversary of his death. Over the year we have been keeping busy fundraising for The Sick Children’s Trust and Leeds Cares to thank them for all that they have done for our family which has been so much fun and a great sense of achievement.
We give families with a seriously ill child in hospital a comfortable place to stay and a friendly ear to listen in one of our ten ‘Homes from Home’. Providing families with somewhere to stay together just minutes from the hospital means that they can be by their sick child’s side and have one less thing to worry about.
To give a family with a premature baby in hospital a place to stay in one of The Sick Children’s Trust’s ‘Homes from Home’, donate £30 today.
