We could be at Ava’s side for as long as we wanted
Ava was born at Newcastle’s Royal Victoria Infirmary and all the scans we had leading up to her birth never revealed any health complications. There were no signs of a heart murmur or that she had Down’s syndrome.
We started to get to know our little girl and prepare to take her home, but at three days old it was discovered that she had a heart murmur. So rather than going home we made our way over to Freeman Hospital, which is on the other side of Newcastle.
There, the doctors discovered that Ava had a large hole in her heart. They couldn’t operate until she was a bit bigger and stronger, so thankfully we were able to take her home to meet her sister Maya and brother Oscar.
Over the course of the next few months, we had a few stays at Freeman Hospital on the children’s ward because Ava just wasn’t gaining weight. We live quite close to the hospital, but because I was breastfeeding I needed to stay with Ava, however, it wasn’t entirely comfortable! On the ward, there were just two beds available and it was pot luck as to who got to sleep on them. Most nights were spent sleeping on a pull out bed or chair. As you can imagine, I didn’t get much sleep or rest.
Fortunately, this wasn’t the case when Ava went in for her open heart surgery in September last year. We were lucky enough to be offered a place to stay at Scott House, run by The Sick Children’s Trust. Ava was due to be in theatre for six hours and after she came out she would be taken to the heart unit, where there is nowhere for a parent to sleep.
While the doctors fixed Ava’s heart, we kept busy. We settled ourselves into Scott House, finding our way around the bedroom, kitchen and living room. We were given some advice from parents who’d been through a similar experience. They said the worst thing they’d done was sit in the hospital, watching the clock tick by so told us to keep busy. This turned out to be the best advice as when your child is in surgery, it’s really hard to distract yourself from all the negative thoughts that race through your mind.
Although we live close to Freeman Hospital, the journey from our house across the city is notoriously bad. Due to Ava’s Down’s syndrome, there was a higher chance that something could go wrong following the surgery or that there would be a complication. Facing the traffic to be by her side would’ve been so stressful. By staying at Scott House we knew if something bad was to happen, we would receive a direct call to our bedroom and we could be at the hospital at the drop of a hat. Knowing that was a huge weight off my mind.
As there was a higher chance of a complication following surgery, we expected to be away from home for weeks, if not months. To make sure we could still spend time as a family, we told Maya and Oscar that they could stay with us at Scott House on the weekends. There was plenty of room in our bedroom and even a playroom – the ‘Home from Home’ was just made for keeping families together. Having said that, Ava recovered incredibly well and surpassed everyone’s expectations. She responded in the best way possible to the surgery and we ended up being in hospital for only six days.
Even though our stay was a lot shorter than we originally thought it would be, Scott House was invaluable. Just being able to be at Ava’s side as late and as early as possible every day meant so much, especially on that first night. Nothing can prepare you for seeing your tiny baby so bloated from surgery and covered in wires. After seeing her, I was emotionally and physically exhausted. Being able to go back to Scott House to relax a little and switch off before rushing back the next morning was so important.
Ava has gone from strength to strength since her operation – I couldn’t have asked for it to have gone any better. To say thanks to Scott House, Maya and I have been busy doing fundraising to make sure that another family gets the opportunity to have a ‘Home from Home’ when they need it.
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.
When one year old Lola Plimmer was transferred by air ambulance from Birmingham Children's Hospital to the Freeman Hospital needing a heart transplant, The Sick Children's Trust's Scott House 'Home from Home' supported mum Ella throughout her time in Newcastle
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.