"A terrifying experience": Oliver's story

Oliver was a newborn baby when he was diagnosed with tetralogy of Fallot (TOF), a form of congenital heart disease affecting the heart’s structure and function due to abnormal development before birth. He had his first surgery when he was just 10 days old, back in 2013.

While he was receiving hospital treatment, Oliver’s family received support from Ronald McDonald House Alder Hey, where they ended up staying three times over the course of 10 years.

Oliver was born at Arrowe Park Hospital in Wirral, Merseyside, on 26 November 2013 and was diagnosed with TOF shortly after his birth. He wasn’t breathing when he was born, but the doctors initially thought it was just a result of his quick delivery. I was experiencing postpartum sepsis, which made them run a few extra tests on him, discovering during a chest x-ray that his heart was enlarged.

We were told he would be discharged from Arrowe Park Hospital on the sixth day of our stay, but the doctors suggested an extra scan to make sure everything was okay, which we luckily accepted, as this is when we found out his heart looked a lot worse than they initially suspected. This meant that Oliver’s heart patient journey was just about to begin, as he was rushed back into intensive care, prepped, and transferred to Alder Hey Children’s Hospital.

Following several more scans, we found out that Oliver was also suffering from absent pulmonary valve syndrome, meaning he had no pulmonary valve present, and a disconnected left pulmonary artery, meaning his left lung was not connected at all. One of the scans also showed that Oliver’s arterial duct was just about to close, and he would have lost his lung if he had not been rushed back up to the ward and given medication right away. The following hours were very stressful. We were rushed over to Alder Hey, not knowing if Oliver was going to make the ambulance journey. My husband Thomas and I were sent home to pack our stuff, as we were not allowed to go in the ambulance with him, due to the high number of doctors looking after him because he was so poorly.

Neither of us was driving at the time, so the journey back to the hospital took us two hours. It was too late to check in when they mentioned the Ronald McDonald House that night, but we were luckily given a room on the ward. Our family couldn’t stay with us, and because we were really young at the time, it felt like we were two ‘kids’ completely lost. Everything changed the next day when we were offered a room at the House, and it helped ease some of our stress from what was a terrifying experience. 

After everything we went through on the first night, the House felt like the best place we’d ever been to. It was a nice feeling to have a place we could call ‘home’, somewhere we could be away from the hospital environment, as we were not allowed to stay with Oliver on the ward. We realised how lucky we were to stay at the House when Oliver was in his first surgery; it felt like our day stopped and being around people in the hospital who were just getting on with their day felt very disturbing. Having the room as our quiet space during that time was amazing, and it was very reassuring to know that we were so close to him.

This operation was not meant to happen until he was older, but it had to be done at 10 days old because he was so poorly. It all went well; he was discharged two weeks later, and we were told he wouldn’t need another surgery until he turned two. Unfortunately, he only made it to 10 months old, when he was rushed in for another emergency open heart surgery. Although we were going through the hardest time of our lives again, we knew how much easier the Ronald McDonald House would make the situation, so it didn’t feel as scary.

We were allowed to bring Oliver to the House if he was back in the ward on time for medication. We were advised to spend as much time as we could away from the hospital over the five days before his operation, as viruses and bugs were going around, which would have worsened his condition and potentially made surgery impossible. We ended up spending all our time in the room, and it gave us back a snippet of normal life as a family.

As Oliver was getting bigger, he outgrew everything he had had done during his first surgery, which meant that his valve needed to be changed. Everything went well again, and we were able to return to our routine as he wasn’t ill all the time. We knew that Oliver would need another surgery in his late teens, but this happened again a lot sooner than planned when, after a small procedure in March last year, they realised his heart was not improving. It was a complicated surgery, and he was in the theatre for nine hours. The experience of having to prepare him for it this time was a lot different and more difficult as he is grown up and understands what’s going on. Before the operation, he was waking us up during the night, telling us he didn’t think he would survive, because he couldn’t comprehend how amazing the surgeons were and that he would get through this.

Oliver’s third surgery was scheduled over the Christmas period, and I feel like we couldn’t have planned it at a more perfect time. We checked in the day before, when the House was hosting a pantomime event, which kept Oliver distracted from what was going to happen the next day.

 Because of all the pressure we were feeling, I was worried we wouldn’t be able to rest the night before his surgery, but the event was so much fun that we were shattered at the end of the day.

The surgeon was pleased with how the operation went, however, afterwards, Oliver was still being monitored due to blood loss. A few hours after his surgery, he started to feel worse and was losing even more blood. We were starting to get worried when around 15 people were checking him, and we were told he might need to be taken into the theatre to be reoperated on, which thankfully didn’t happen in the end.

Our younger daughter, River, stayed with us during our most recent stay at the House, which was a completely different experience. Initially, my mum was looking after her for a few days while Oliver was in intensive care, but she was finding it difficult because she’d never been apart from us before. River came to the House two days after the operation, and it was amazing that we were able to give her a bit of normality, as she thought she was going on holiday.

On Christmas Eve, I stayed at the House with River because this was the first year she could understand Christmas, and I wanted to make it special for her. I remember crying when I left Oliver in the hospital that night because we were all separated, but it was reassuring to know we were so close at the same time. When I got to the House there was a basket in our room with Christmas goodies, a little Barbie doll for River and a present for Oliver. It was so lovely, and I called him straight away to let him know. We didn’t feel the Christmas spirit over on the ward, but the staff at the House made such a big effort to mark this special day.

In terms of what the future holds for us, Oliver is due for another scan soon to find out if the last surgery worked. Because of his many conditions, a plan cannot be made for him, and we just need to wait and see how his heart develops. He is glad this stage is over because of the anxiety and stress he was feeling, but he’s doing well now, got back into his routine, and enjoys football and darts. He will need another surgery before he gets to adulthood, and the journey will continue as there’s no cure for his condition.