The Sick Children’s Trust gave us the gift of time
Our lives changed forever on 18 November 2018. While enjoying a quiet Sunday night, Emily went into spontaneous labour at only 27 weeks and five days pregnant with our twin boys, Dexter and Zachary.
When Emily’s waters broke, instinct kicked in. I delivered the boys within five minutes on the bathroom floor. Dexter arrived first, shortly followed by Zachary who wasn’t breathing – so I started to perform CPR on him. The 999 call handler on the other end of the phone was brilliant and helped me hold it together until the paramedics arrived. When they did, I went into shock. All the adrenaline drained out of me.
I went in the first ambulance with Zachary, while Emily followed with Dexter. The journey from our house to Airedale Hospital takes ten minutes, but it honestly felt like everything was going in slow motion. It seemed to take hours. 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.
Zachary and Dexter were seriously ill due to their prematurity and needed specialist treatment which couldn’t be provided in Airedale. Things looked like they were about to get worse. Due to a limited number of neonatal intensive care beds across the country, there was talk of moving the boys to separate hospitals – Newcastle and Birmingham. Luckily, the fantastic Yorkshire and Humber Infant Transport Service, also known as Embrace, were able to pull some strings and space was found for both the boys in Leeds Children’s Hospital.
It was a tragic moment seeing our boys so briefly before they were taken from us albeit to receive the care they needed. It was at this moment that Emily, against medical advice, discharged herself in order to reunite our family.
At Leeds, we found ourselves back in a false sense of security. Our boys were receiving the country’s pinnacle care, with the best doctors and nurses looking after them. But sadly, sometimes that’s just not enough.
All these medical terms and phrases were being thrown at us and as we were taken to see our babies we felt bewildered. They were hooked up to lots of machines and receiving blood transfusions – it was shocking to see. That first night we were kindly put up in a room at the hospital and tried to figure out how we’d be able to stay by Dexter and Zachary’s bedside when they were so ill. It was daunting to think that if the boys’ condition worsened we could be spending 90 minutes in the car rushing to their side. We had to mentally prepare.
The ward staff, unbeknownst to us, had made a referral to Eckersley House, which is run by The Sick Children’s Trust. We were shown to our room by Fiona, the Assistant House Manager. Having not been aware of The Sick Children’s Trust prior to this, our immediate thought was of the cost but these worries were soon alleviated when we were informed that our stay at Eckersley House would be entirely free of charge, as is every family’s stay. Further to this, there was a direct line from our room to the ward in the hospital which soothed our worries and we knew we were only a phone call away.
However unfortunately, with the hectic day that had proceeded us, we had forgotten to pass on our extension to the ward staff. This resulted in a 5am wakeup call from one of the nurses to inform us that Zachary was struggling. Following a head scan, it was revealed that he had suffered a catastrophic bi-lateral brain haemorrhage and we were informed that due to the extent of the bleed there was no chance of survival. 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.
After Zachary’s passing the direct phone line to the ward became invaluable as it allowed us to call for an update with regards to Dexter’s condition. This provided us with great comfort and enabled us get a more peaceful night’s sleep.
We got into a routine of having breakfast at Eckersley House and spending most of the day with Dexter, benefitting from family integrated care. At every opportunity we’d be trained on various tasks such as feeding and administering medicine and could spend as much time bonding with Dexter as possible. Eckersley House lifted such a burden, it only ever took us five minutes from bedroom to bedside.
Jane, Fiona, Caroline and Sheila, from Eckersley House, were always there offering support and guidance in our times of need. They provided us with a comfortable bed to sleep in and facilities to cook and clean ourselves, and we were always greeted with a warm and friendly smile. It was more than accommodation, it was a ‘Home from Home’.
Our stay at Eckersley House, gave us the opportunity to speak to and make friends with other parents that had children on the neonatal unit, which allowed us to not only receive support from them but also provide them with support. It became more like an extended family with everyone we came into contact with showing compassion and camaraderie. It means so much in that situation to speak to other families as everyone is going through something similar. And there are those who have been at Eckersley House longer and share their wisdom.
Dexter came on in leaps and bounds, with only a couple of hiccups along the way, and after four weeks of round the clock care he was deemed stable enough to be transferred back to Airedale. He spent five weeks there but now we’ve been home for a few weeks and he’s doing really well. He loves his milk and has gained three pounds! While everyone comments on how small he is, to me he’s huge. When I delivered him he fit in the palm of my hand.
When we were in Leeds, Emily and I decided that we wanted to fundraise for The Sick Children’s Trust and Leeds Care. We want to help ease the burden for any other family who finds themselves in a situation like we did. We want to do everything and anything we can to help provide that care to children, because they need their parents by their side as much as a parent needs to be with their child. We know how important this money is to families with seriously ill children in hospital and the impact a ‘Home from Home’ has. The provision of Eckersley House proved invaluable to us, as it allowed us to be right where we needed to be. We are so thankful that we were given the opportunity to stay there.
So, in memory of our beautiful son Zachary, Emily and I will be undertaking a year’s worth of challenges – some of these will physical and some will be mental to represent the journey we’ve been on. All of which will be raising money for both The Sick Children’s Trust and Leeds Care.
Sarah and her husband Paul were spending the weekend away in London when she gave birth 12 weeks prematurely, 270 miles away from home. Stevenson House made sure they had somewhere stay close to their son Brandon.
Every year we help almost 3,800 families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.