The Sick Children’s Trust kept our family together at the worst time
Our son has made us so proud. The impact he has had on so many people in less than two years of life is so phenomenal that we are bursting with pride.
Ewan was a happy and playful little boy. His two favourite things were dinosaurs and his iPad. On his iPad, he had a dinosaur sound app which he constantly played with – it would always make him smile, and he had such a beautiful and cheeky smile.
During a routine pregnancy scan, we were told that Ewan’s measurements were too small, so the doctors made sure they were prepared for anything. We had a paediatrician on standby when he was delivered by emergency caesarean at our local hospital, the Cumberland Infirmary, which we are so thankful for as he was very poorly when he arrived.
In fact, Ewan wasn’t breathing at all and he needed to be resuscitated, which seemed to take forever, but he came back to us. In hindsight, he was lucky to pull through that night alone. He did because he was a true fighter.
Within 24 hours, we were transferred to Newcastle’s Royal Victoria Infirmary (RVI) for emergency treatment as Ewan was still struggling to breathe. When he was just over a day old, he had his first operation to ease that struggle. Ewan was so small and even though he was full term, he only weighed 5lbs. He was difficult to incubate because of a narrowing to his upper airway, so as a desperate measure, they made the decision to operate and create a tracheostomy – a hole in his windpipe to enable him to breathe.
For the following five weeks, Ewan remained in the Paediatric Intensive Care Unit (PICU) until he became stable and we learned how to manage his trachy and naso-gastric feeds. It was during these first few weeks of life that we were introduced to Crawford House, somewhere that would become our ‘Home from Home’ at the most important times for our little family.
Ewan was diagnosed with Hallermann–Streiff syndrome – an extremely rare genetic disorder found in just 150 people worldwide. His symptoms were manageable and once stable, we were delighted to bring Ewan home, and to our amazement, it wasn’t until a year later that we were back in Crawford House. Ewan had grown and developed so well – he was happy, smiling and lively.
At 14 months old, Ewan had his first serious admission. He became really poorly with a chest infection. We used our open access to the children’s ward at the Cumberland Infirmary, but when his condition worsened significantly, he was transferred to the RVI.
Ewan’s breathing difficulties seemed to be more severe than most people with Hallerman-Streiff Syndrome. He was put on a ventilator with oxygen, which he would need overnight for the rest of his life. His medical requirements were still manageable, and after two months in hospital we were able to take him home.
But then in November last year he became seriously ill again with what we believed was another chest infection, and we had another emergency transfer to PICU, where we stayed until Christmas Eve. It was the perfect Christmas present anyone could have given us; we were so happy that we could spend Christmas back home with our little boy.
From February, Ewan’s health rapidly declined. He needed another emergency transfer to Newcastle, and stopped breathing in the ambulance. He needed an emergency trachy change to clear his airway so that he could be bagged with 100% oxygen.
After just two days on full ventilation on PICU, it was as if that hadn’t even happened. Ewan bounced back so quickly! Before we left he had a bronchoscopy, a camera exploration of his airway and lungs. He was given a larger tracheostomy tube and sent home on slightly increased oxygen.
We knew that his lungs were small and this was causing him problems, along with a significant narrowing of his airway. But having said that, we were told his condition, tracheomalacia, was moderate to severe, where it had been severe a year before. Everything was moving in the right direction, and we had no cause for alarm.
Although Ewan had bounced back quickly, he went downhill very quickly again when at home, and needed his ventilator during the day as well as at night. His oxygen requirement crept up and up, and after just one week at home, he was hospitalised again. This time he would not return home. We spent the next two months in hospital with Ewan.
A week before he died, the news that his condition was life-limiting came completely out of the blue.
We were told it was terminal. It was three weeks before his second birthday.
Those weeks were stressful to say the least. This was when Crawford House played a huge part in our lives. The team were so supportive, they all got to know us and they were there for us.
I remember the day we were told Ewan wouldn’t make it so clearly. I left the hospital – I just needed five minutes away, to gather my thoughts and have a cuppa. I opened the door into Crawford House, saw Gail – the House Manager – and just burst into tears. She put an arm around me and hugged me. She knew Ewan so well and was in disbelief just like me.
That week we remained by his side, but The Sick Children’s Trust were kind enough to let us keep our room for family members who wanted to be with us and say goodbye to Ewan. Every day we went back for a shower and change. It was so important for us to look after ourselves, so we could be there for Ewan 100%. We learnt during our earlier stays that not eating, sleeping or taking care of ourselves meant we couldn’t care as efficiently for Ewan.
It was very traumatic knowing that our son was dying. We wanted to spend every moment with him, to show him how much we loved him and how proud we were of the fight he had given.
In the early hours of the morning, Ewan slipped away. We had already packed our bags at Crawford House. I carried my baby boy to the car, and we drove him home to where he belonged.
Since we lost Ewan, we’ve had two big events to conquer – his funeral and what would have been his second birthday.
We have raised over £6,500 for the charity now – £6,500! That’s the impact our son had on people. How could you not be proud of that? He will help so many more children have their parents by their side. We’ve had wonderful messages which show just how much he touched people’s hearts and how much of an inspiration he was.
And an inspiration he will continue to be to many.
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