Thanks to Scott House we could always be with our son when he had open heart surgery
The day after my son, Hunter, was born at the University Hospital of North Tees in March 2022, the doctors detected he had a problem with his heart. Further tests revealed that he had four congenital heart defects; ventricular septal defect (VSD), pulmonary stenosis, a misplaced aorta, and a thickened right ventricular wall. These combined conditions resulted in a diagnosis of tetralogy of fallot (TOF).
We couldn’t believe what we were being told. The routine scans throughout my pregnancy didn’t pick anything up, and Hunter was always seen to be growing at a healthy rate. My partner, Rhys, and I thought we were having another straightforward pregnancy, similar to Hunter’s older sister Lexi-Rose, so being told the news of Hunter’s heart conditions was quite upsetting. We were devastated by the news that Hunter needed open heart surgery to correct the conditions, with the operation happening either when he was seven months old or reached 7kg in weight, whichever came first. We brought him home and spent time trying to find out more about his conditions and the surgery. We wanted to have as much information as possible for when the time inevitably came. However, nothing could prepare us for how poorly he would get, or for the stresses and strains of the day of his surgery.
Hunter rapidly deteriorated in the months that followed. He started struggling with his breathing and, as he could no longer tolerate drinking from a bottle, needed to be placed on a feeding tube. In September, Hunter’s planned operation was cancelled on seven occasions due to other emergencies, and a couple of times we had even made the trip to the Freeman Hospital in Newcastle where his surgery would take place. With Hunter’s health getting worse, he was admitted for urgent care back at the University Hospital of North Tees. He’d reached a point where he simply couldn’t wait any longer.
Hunter was admitted to The Freeman Hospital at the end of September with his surgery scheduled for 3 October. We knew he would be in hospital for a long time while he recovered and, with parents unable to stay on the intensive care units, we had no idea how we would be able to stay with him. We thought we would have to travel from home to the hospital every single day, but living an hour away from The Freeman we also knew that we might have to pay for a hotel so we could be with him after the surgery. When we shared our concerns with the cardiac nurses, they mentioned that Scott House could help us. It’s a ‘Home from Home’ run by The Sick Children’s Trust charity, a place where families can stay during their child’s treatment, on the hospital site itself. With Rhys being able to stay there, it meant we could support each other through this extremely worrying time. I was so pleased to have him there with me, it made a massive difference.
Hunter had his surgery when he was six months old, with us staying at Scott House throughout his two-week recovery. I’m so grateful we could be there, it really benefited us as we had no idea how long Hunter was going to be in hospital. None of the other options would have been practical for that length of time. The ‘Home from Home’ took away all those stresses so we could just focus on being by Hunter’s side. Without The Sick Children’s Trust we would have been in a really difficult position as neither of us drive. The distance between our home and the hospital would have been so hard to cover every single day.
Since his surgery Hunter has been doing marvellously – he’s like a new boy. He still has follow-up appointments, both at our local hospital and at The Freeman, but he’s doing amazingly well. In November his consultant told us that Hunter will need another surgery, but this will be a lot further down the line, by which time he will be old enough to sign his own consent form.
Having supported countless families with children needing transplants over the past four decades, we remain determined to ensure that the subject of child organ donation continues to be discussed. In support of NHS's Organ Donation Week 2023, a trio of families have kindly shared their transplant stories.
As part of NHS Organ Donation Week 2023, we spoke with mum of eight Emma Austin from Shrewsbury, who we supported at our Scott House 'Home from Home' while her 13-year-old daughter Olivia underwent a heart transplant at Newcastle's Freeman Hospital. Emma describes the donor heart as “an incredible gift” that has provided Olivia with the chance of a normal life after a decade of struggle.
Organ Donation Week 2023: Following his daughter Beatrix's long awaited heart transplant in June, dad Terry Archbold brings us up to speed on her journey and his ongoing desire to raise awareness about child organ donation.
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.