It has taken me over three years to get to a point where I can share my family’s story. During this time my son William has been receiving specialist treatment in Cambridge and my partner, Larissa, and I have been supported by The Sick Children’s Trust. We have stayed in both Chestnut and Acorn Houses. To be given a room in a ‘Home from Home’ just minutes from where William has received lifesaving treatment has been so important and enabled us to be there for our son every step of the way.
20 minutes after he was born William began to crash. He was struggling to breathe and making a funny high-pitched noise with every inhale. As nurses swarmed around the bed, and the initial euphoria of becoming a Dad for the first time morphed into panic, William was rushed up to the neonatal unit at Bedford Hospital. 11 traumatic days later, and showing no signs of improvement, the doctors told us they had no choice but to transfer William to The Rosie Hospital in Cambridge, where they hoped the specialists would work out what was wrong. And so, by 9pm that evening, we found ourselves in a hospital far from home, with nowhere to stay, staring through the window of the neonatal intensive care unit (NICU) watching our heavily sedated and ventilated baby fight for his life.
Just one hour later we learnt about The Sick Children’s Trust and that they offered families a place to stay, completely free of charge, in what they called ‘Homes from Home’. We were given a key to Chestnut House and a room number. Reassured that if anything changed during the night the nurses would contact us on a direct phone line in our room, we said goodnight to our William and took the lift two floors down to Chestnut House. That night, emotional and exhausted, it was such a relief to collapse onto a comfortable bed in a cosy private room, having had tea out of a proper mug, whilst relaxing on a comfortable sofa in a homely living room, rather than a plastic cup from a vending machine.
And so Chestnut House became our home. Larissa spent every waking moment with William, but I had to go back to work. It was a relief to know that when I did get back to Cambridge there was somewhere to eat, shower and rest so that I could be strong for my boy. At this point we didn’t know just how long our stay would be, but doctors continued to carry out all sorts of tests and we quickly became familiar with the specialists and nurses in charge of William’s care. After two weeks William was transitioned across to the high dependency unit (HDU) and we moved across to the charity’s second ‘Home from Home’ in Cambridge, Acorn House. Acorn House was incredible too. A proper home, with a spacious kitchen, big bathrooms and amazing house staff who knew exactly what to say to us whenever we saw them. You can’t imagine the relief of not having to go far from your child; it really removed enormous pressures, not just practically, but emotionally and financially too.
William’s diagnosis finally came when he was five weeks old. We were told the devastating news that he had laryngomalacia and bronchomalacia, which meant the cartilage in his airways had not developed properly and, as a result, his airways were floppy and couldn’t stay open when he was breathing. He was also diagnosed as having subglottic stenosis, which meant all his airways were very narrow. It was so overwhelming to hear and I really struggled to process the news. Abi, the House Manager, was a real support during this time because she understood what we were going through. However, rather than talk to me like the dad of a seriously ill baby, she helped me to forget about it for a few minutes and feel normal. This made all the difference because I needed those moments to escape the mental turmoil and just enjoy having a conversation with a lovely human being. It meant when I did get back to William I was in a better frame of mind and could be stronger for both him and Larissa.
The doctors decided they would try to extubate William a few days after his diagnosis, but this didn’t go according to plan. They had been trying to remove the tube that had been assisting him when he crashed, stopped breathing and went into cardiac arrest. I walked onto the ward to see a doctor performing CPR on my baby whilst another stood to the side of William charging up a defibrillator. The memory will traumatise me for life. After the failed extubation attempt, the only way forwards for William was a tracheostomy operation. Fortunately this was a success and our baby was given a third airway, which meant he began to breathe unaided. After surgery he improved quickly, but the pressure was then on Larissa and I to learn how to administer his treatment, understand the tracheostomy tube and apply stoma care. Usually this would have taken at least six weeks, but because we were staying in Acorn House and right there on site at all times, we learnt how to confidently care for William in under a month and got him home sooner.
Two and a half months after he had been born we took William home for the first time. Although we knew there would be many hospital visits in the future, it was amazing to finally spend time with our baby and bond with him outside of the hospital. There have been set backs of course. Due to the tracheostomy tube and open stoma William is very prone to infections and he also suffers with gastro problems – normally this results in a stay at Bedford Hospital, but over his first birthday he had a really bad spell, which meant we were transferred by emergency once again to Addenbrooke’s. Since that emergency we have been back several times for small operations and procedures and Abi has done her best to provide us with a room in Acorn House, which means overnight we have recharged and been fresh and energised for William the next day.
At some point in the future, once he is bigger, William will undergo stoma reversal surgery and have the hole in his windpipe closed up. For now though, apart from the tracheostomy tube, he acts like any other three year old. He goes to a normal nursery, paints silly pictures, charges around with his friends and comes home smiling, which is a real comfort to see.
Ryan Mathewson, William’s Dad.