My son Archie was born six weeks premature at Rotherham Hospital. Despite being so early, he weighed a good 6lbs. However, due to his prematurity Archie was diagnosed with several life-long conditions including multicystic dysplastic duplex horseshoe kidney, where one of his kidneys didn’t develop correctly in the womb and the other is in his pelvic area shaped like horse shoe. Both kidneys are also joined together with tissue. He also had an imperforate anus, causing the anus to be missing as well as being diagnosed with a low lying tethered spinal cord. This means his spine did not separate from the skin on his back during development, preventing his spinal cord from ascending normally.
As you can imagine this was a lot to take in about our newborn son, as was the news that he would require surgery and treatment when he was a day old to ensure his survival. With Archie having such complex conditions he needed specialist care, so we were transferred to Leeds Children’s Hospital, over an hour away from our home in Rotherham. It was in Leeds that Archie had his first surgeries to insert a breathing tube, give him a colostomy and a mitrofanoff so that he could pass waste products. It was horrible watching our son go through all these procedures, a situation made worse when I was told that I couldn’t stay on the intensive care unit with him. Being over 40 miles away from home I couldn’t bear the thought of leaving Archie, especially if he deteriorated quickly and I needed to get back to his side.
“It’s an incredible comfort knowing that the ’Home from Home’ is always there, supporting us and keeping us close to Archie.”
Thankfully I was told that I had a place to stay with The Sick Children’s Trust at Eckersley House. I didn’t know anything about the charity, but Eckersley House is a ‘Home from Home’ located just minutes from the hospital. I was able to stay there, free of charge, allowing me to be by Archie’s side throughout all his surgeries and recovery.
We spent over nine weeks in Leeds while Archie had further surgeries to help manage his conditions before we were able to go home for a short time. We’d been informed that Archie would have his conditions for the rest of his life and he would therefore require multiple surgeries and medications to ensure he could still have a good quality of life. Whenever he has needed treatment at Leeds Children’s Hospital, The Sick Children’s Trust and Eckersley House have been there for us as much as they can, providing us with a place to stay. It’s an incredible comfort knowing that the ’Home from Home’ is always there, supporting us and keeping us close to Archie.
Eckersley House really is a ‘Home from Home’ providing everything we need while Archie is in hospital, with our own room, bathroom and communal kitchen and living space. Archie is now eight years old and doing really well, despite the conditions he has to contend with every single day. Throughout his life he’s had 39 operations and we’ve been supported by Eckersley House on 18 different occasions. With the ‘Home from Home’ being in such high demand we haven’t always been able to stay there turning to a hotel room instead. On those occasions it made it even clearer how important The Sick Children’s Trust and their ‘Homes from Home’ are to parents while their children are in hospital. When we have been supported by Eckersley House it really has become our second home and I don’t know what we would have done without it. Throughout Archie’s time in hospital all his siblings, Kian, Cole and Ruby have also been to stay with me at Eckersley House allowing them to spend time with their younger brother. The staff are wonderful and always give us a warm welcome when we come back. They are a real part of our family.
Archie’s most recent surgery was to remove part of his large and small intestines that were joined to his bladder. This was to give his bladder more room so that it could get to the correct size. Yet again we were supported by Eckersley House, so he never had to spend any time alone in hospital. He’ll continue to need operations throughout his life, so we expect further stays at Eckersley House soon. We’re now waiting for him to have a cleft palate operation to repair the tissue that didn’t join correctly to make up the roof of his mouth. Archie has also recently been referred to Great Ormond Stret Hospital for specialist tests into his other conditions. Archie is a trooper though, so we know he’ll just get on with these procedures like he did with all the others. We’ll always be grateful to The Sick Children’s Trust for the amazing support they have given us.
Caroline Menday, Archie’s mum.
