My son spent his first Christmas recovering from open heart surgery
My son, James, was rushed to Pinderfields Hospital in Wakefield on the 16 December 2022 after becoming very poorly at home. After running tests overnight the doctors found a misdiagnosed heart condition the following day. James was quickly rushed to Leeds Children’s Hospital, but his condition deteriorated in the ambulance and his body began to shut down. Upon arrival we were met by the cardiac high dependency team who admitted James to the intensive care unit and put him on a ventilator. It felt like lifetime before he was stable, but eventually they were able to start doing scans to determine exactly what was going on with his heart. James was diagnosed with coarctation of the aorta and hypoplastic arch, birth defects in which the aorta is narrower than usual, as well as severe left ventricular dysfunction. These heart defects were constricting the amount of blood James could pump around his body.
James would need heart surgery to correct the conditions, but as he was in such critical health the doctors needed to wait until he was more stable. With James showing no signs of improving, the doctors were becoming extremely concerned. We were unsure if he would even make it through the night, so the decision was made to go ahead with the procedure. He was taken into the operating room and underwent open heart surgery to repair the problems with his heart.
The operation was successful, but James’s heart had suffered a lot of damage. At this point we knew we were going to be in hospital for a long time, and there was still the very real possibility that we might not walk out without our little boy. We were devastated and terrified. To make matters worse, James had several complications during his recovery. He had caught coronavirus just before we went into hospital and he needed to be on a ventilator for a week after his surgery. His heart was taking a long time to recover and James was struggling with swapping from IV medication to oral. What my little boy was going through was horrific, and I blamed myself. As a single parent who James is with nearly all the time, I had felt like I had failed him. I knew I had to be strong for James and put on a brave face for our family, but the first month was the hardest. As James got stronger each day, his personality started to show. The cheeky boy he became was stopping everybody in their tracks. The biggest struggle was being alone throughout all his scans, blood tests and little trips to theatre, especially the constant bad news about his heart. With James’ dad, Ryan, unable to take time off work he could only visit for an hour a day, so a lot of the time it was just the two of us.
As James was being treated on the intensive care unit, I was unable to stay on the ward with him. For three days I had a temporary room at the hospital, but I couldn’t stay there long term. With our home being over 20 miles away, I desperately needed somewhere to stay close to the hospital. I couldn’t have travelled that distance everyday while my little boy was so poorly. That’s when I was supported by Eckersley House, a ‘Home from Home’ located just a short walk away from the hospital. Eckersley House is one of The Sick Children’s Trust’s ten ‘Homes from Home’ and it made our hospital lives that little bit easier. I had a nice bed to fall into after a long day on the ward and I could leave the hospital to take a break and process everything in private. That time alone meant a lot to me as well as being able to see James any time day or night.
James had his surgery a week before Christmas so we had to prepare ourselves that his first Christmas was going to be spent in hospital. To be honest it was a complete write off for us as we didn’t have much cause to celebrate, with James being so poorly. In fact, I was dreading Christmas day. On Christmas morning, Ryan visited with James’ grandparents. We tried to make it as normal as possible, with gifts and lots of cuddles. Sadly James was having a bad day, so nobody stayed long. James and I then spent the rest of the day having cuddles and watching Christmas films. While it was not the Christmas we wanted, we still had the best gift as James didn’t need to be sedated any longer and he was making progress to move off the intensive care unit. I felt very teary throughout the day as I wanted to get wrapped up in the family joy of Christmas, but it was just me and James.
Eckersley House supported me for four weeks before James was moved onto the ward where I could stay by his bedside. I always be very grateful to The Sick Children’s Trust for supporting and keeping me close to my son’s side when he needed me the most. Without the ‘Home from Home’ those hard times would have been unbearable. I don’t know how I would have got though those first weeks of James being in hospital without them. It would have been very distressing to have to travel home every day to an empty house, unable to see my little boy whenever I wanted to check on him.
When James finally moved onto oral medication we expected to go home fairly soon, but unfortunately he then got sepsis from his central line which required more IV antibiotics and a longer spell in hospital. After two months we finally made it home, but we wouldn’t see improvement to his heart until three months later. We are hopeful that he won’t need any more operations, but we’ll have to see how things go considering the turmoil he has been through.
This Christmas we’re planning on having a do-over so we’re treating it as his first Christmas. We’re going to have a big family celebration and make it the most special day for James. We’re all very excited!
A 300-strong audience were treated to a fabulously festive evening to kick-start the Christmas celebrations at St Marylebone Parish Church, with carols, entertainment, celebrity readings and stories of hope all helping to raise awareness and funds for The Sick Children’s Trust.
Every year we help 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.