The support Scott and Crawford Houses gave us was invaluable, you can’t put it into words what it meant
While I was having my 20 week scan the nurse found that there was a potential problem with my son, Archie’s, lung. Unfortunately the scan wasn’t detailed enough for them to see the extent of the problem so they couldn’t tell whether it would be corrected as he continued to grow or if he would need surgery when he was born. This made things a lot harder as we really didn’t know what to expect. It was going to be very 50/50 if he would need surgery immediately to fix the problem. It would all depend on how badly it was affecting his breathing. We could only wait until he was born to find out.
I gave birth to Archie at Newcastle’s Royal Victoria Infirmary (RVI) where he was formally diagnosed with congenital cystic adenomatoid malformation (ccam). This caused one of the lobes on the top half of his left lung to develop into a cyst which was making it hard for him to breathe. We knew that he would potentially need surgery early on but now it was a reality. Archie was transferred across Newcastle to the Freeman Hospital where he was scheduled to have an operation at just one day old. The surgery was to remove the entire lobe and cyst to stop it impacting his breathing, but this would not affect the rest of lung which would still continue to develop.
I needed to remain at the RVI for a day while I recovered from giving birth before my husband, Carl, and I could also make the journey. We went straight to the Paediatric Intensive Care Unit (PICU) when we arrived where Archie was being prepped for surgery later that evening. As he was taken to the operating room a nurse told us about The Sick Children’s Trust which runs Scott House. We had been given a room at the charity’s ‘Home from Home’ where we could stay while Archie was in hospital. She took us over to get us settled in and it was a welcomed distraction for us as, painfully, there was nothing we could currently do for our newborn son. Having something else to focus on, while knowing we were just minutes away from the hospital, really helped us to deal with the situation.
Being able to stay at Scott House made such a difference to us, we live an hour and a half away from Newcastle and making that trip every day to be with Archie would have been horrendous. It was absolutely priceless for us to be able to stay just a five minute walk away from the ward as, no matter what, we could always be back by Archie’s hospital bedside. Our family could also come and visit and this was a place where we could all be together so me and Carl could also be supported.
The operation went well and the doctors successfully removed the cyst, which was later tested and found to contain cancerous cells so the outcome could have been a lot worse. Archie stayed at the Freeman Hospital for two weeks while his breathing was monitored post-op before he was transferred back to the RVI for specialist care and we were given a room at the charity’s other ‘Home from Home’ Crawford House.
Archie was placed on a ventilator to help with his breathing which was monitored constantly. He stayed on it for almost four weeks, but as he continued to grow and his lungs got stronger he was slowly weaned off the ventilator and could start breathing for himself.
It was so reassuring being at Crawford House during all of this so we could be as close as possible to Archie to comfort him and never miss a development. Shortly after we moved to Crawford House, Carl had to return to work but my mum and auntie were also able to stay with me which was a great support so I was never on my own. The house staff and other families who were staying in both ‘Homes from Home’ also supported me a lot, especially one mum who I became friends with at Scott House.
Carl and I knew a lot about the charity and Crawford House because his parents, Andrea and Kevin, had stayed there 20 years ago when Archie’s Uncle Sam needed treatment at the RVI. Andrea told us all about the ‘Home from Home’ and how much it helped them during Sam’s time in hospital. With the likelihood that we too were going to need the charity’s support it was very reassuring to know it was there should we need it. If it wasn’t for Andrea we wouldn’t have known about the charity and the amazing work it does. We want to spread as much awareness as we can because it is so important to families in that moment when their child is seriously ill.
Archie is 15 months old now and doing brilliantly. When we left hospital we were given a cpap machine to assist Archie with his breathing throughout the night, he also used it occasionally during the day. He was also on a feeding tube and given a lot of medication because he was struggling with reflux. Since then, he has absolutely excelled coming off the feeding tube and medication. He also came off the cpap machine in December 2020 and he has not used it since. He’s a little warrior and nothing his holding back now, in fact he is like a bull in a china shop!
We will always be grateful for the support we received from The Sick Children’s Trust. It without a doubt makes such a big difference to families and it is an invaluable service which is why we will always continue to support this charity so they can be there for more families.
Max's family stayed with us four years ago when he was waiting eight months for a heart transplant. Since then they have inspired a huge change in the laws around organ donation in England. Read how they have been getting on since leaving Scott House
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