When our twins were born, we had no idea that at just three months old one of them would need lifesaving major heart surgery at Great Ormond Street Hospital (GOSH).
I remember at our 20 week scan having a feeling that something wasn’t right. When I saw the boys – Hayden and Tyler – myself, my partner Caroline and the sonographer all paused on twin two to take a look at Hayden's heart. The fourth chamber took a while to show itself but we all breathed a sigh of relief when it finally did. At the time, we thought no more of it but looking back it was like a sign.
When the boys were born Hayden was taken to special care for fluid on his lungs and we were told he would be back with me in a couple of hours. Days passed, and he was still in special care. His breathing was laboured and he was struggling to feed. Ten days later they said Hayden could be discharged, but not before they did an ECG due to a heart murmur. It was then that we were told he had a small hole in an awkward place in his heart and it would be likely that he’d need surgery due to the position. We were devastated.
We tried to remain calm and enjoy the first few days with our boys in hospital. Hayden underwent scans and assessments, and Tyler was also readmitted as he was slightly jaundiced. This actually made the situation much easier for me as I was breastfeeding. However, even though Hayden was feeding, he wasn’t gaining any weight. The doctors explained he was getting negative calories due to how hard his heart was having to work during feeding. Basically every time he fed, it was as if his heart thought he was running a marathon.
We were finally sent home with excellent support from the hospital’s neonatal team who came out to see us weekly. We also went into hospital weekly for Hayden's heart to be checked. The decision was made to send us to GOSH once he had grown strong enough for a heart operation ideally when he was six months old, however when Hayden was seen by the consultant from GOSH he found a total of two holes and a tear. All of which required repair.
As we waited for the surgery, Hayden also developed a hernia in his groin. These are usually operated on very quickly but Hayden's heart wasn't strong enough to go through surgery. So we had to wait until after the heart surgery – which ended up being brought forward to when he was only two months old.
Hayden’s surgery was cancelled twice – the first time he was in his gown ready to go to surgery when we were told it wasn’t going ahead. In hindsight this was really good for us, as when the time came, we knew what to expect and how to feel. Which really helped me. The first time round I struggled to be strong for him.
The surgery finally happened in January last year, just after Hayden turned three months. He was in theatre for three hours but it felt like the longest three hours of my life. I was constantly thinking the worst could happen.
As we waited for news, Caroline and I began to wonder what we’d do about accommodation. We knew that while Hayden was recovering on the cardiac intensive care unit (CICU) neither of us would be allowed to stay with him. We had been in the GOSH accommodation, but we knew we wouldn’t be able to stay there while we waited for Hayden to get better. And with his twin brother Tyler with us too – this started to become another worry we had to deal with.
30 minutes into theatre I got a call. My heart sunk, thinking ‘it’s Hayden’. As I answered the phone, my heart felt like it was going to burst from my chest. My mum and Caroline staring at me with baited breath. It was Tina from The Sick Children’s Trust. A very welcomed call - unlike what we were all fearing.
Tina told us about The Sick Children’s Trust and its ‘Home from Home’ Guilford Street House which was just a few minutes away. We stayed at the house, which was free and meant we were close to Hayden as he got stronger. When he was moved off CICU, Caroline slept on the ward with him, while Tyler and I continued to be supported by Guilford Street House.
Had it not been for Guilford Street House and The Sick Children’s Trust, we would have had to leave Hayden in his most vulnerable state, when he needed us most, after he had just had major open heart surgery. The thought of doing that is painful even now, if we’d had to have done it, it would’ve been unbearable.
It was the Christmas holidays so rooms in hotels were hundreds of pounds and we didn’t know how long Hayden would be in hospital for – it wouldn’t have been possible to pay for it so our family would’ve been separated. One of us would’ve had to stay at the hospital, while one was at home with Tyler. Our boys wouldn’t have been able to be close to each other. Just hearing Tyler helped to soothe Hayden during his hospital stay.
Before we were in this situation, we’d never heard of The Sick Children’s Trust, so since leaving Guilford Street House we have made sure to spread the word, and it never ceases to amaze me just how many people haven’t heard of the charity.
This charity is very close to our hearts, it was there for us when we deeply needed help. Tina, the House Manager, was someone who was always happy to listen, she’d be there for us to speak to – especially for me. When I left the ward after seeing Hayden, it was just me and Tyler – a three month old that was struggling to sleep. It was very hard having a poorly twin in hospital, and Tyler who needed feeding and looking after too. Tina really went above and beyond in supporting me – she’d help me with Tyler (and everything that comes with a new baby) up the stairs. And when I needed a shower, she offered to keep an eye on Tyler which really was incredible.
Since Hayden’s operation it’s been so nice to see his personality shine through. He has a scar the length of his torso – but apart from that, you’d have no idea what he’s been through. He really does love life. He's such a happy boy. He doesn't know how to walk, he just runs, full speed... everywhere. Sometimes I watch him and wonder if that’s because of the rough start he had. Who knows?
We will continue to be supporters of The Sick Children’s Trust. They did so much for us. We have done a fun run and held a Big Chocolate Tea party in the last couple of months and every time we tell Hayden’s story and explain what the charity did for us, someone’s eyes always well up.
You don’t know until you’ve been there just what a fantastic charity The Sick Children’s Trust is.
Hayden and Tyler’s mum