Scott House became a sanctuary, a place where you could catch your breath

My daughter Lola was born in August 2021 in Stoke on Trent, around ten miles from the home my partner Rob and I share in Stone, Staffordshire. Everything was going fine, but things took a dramatic turn at the start of 2023.  

I was starting to worry about Lola’s rapid breathing. I asked Rob’s sister Clara, who is a health visitor, to check and she wasn’t happy. We went to A&E at The Royal Stoke Hospital, being admitted for a night before going home to nurse a suspected respiratory infection. We had another short stay a few days later as Lola wanted to sleep all the time. Again, we were discharged, being told her post-viral lethargy might take a few months to ease.   

Seven days later, Lola stopped eating completely. She couldn’t even tolerate breast milk. Something was very wrong, so we called for an ambulance. Within ten minutes of arriving back at the Royal Stoke Hospital, a doctor noticed one side of her chest was enlarged. The Intensive Care Unit had a type of scan that uses sound waves to check for heart issues. Lola was suffering from dilated cardiomyopathy, meaning her enlarged and weakened heart was unable to pump blood around her body.   

Being told Lola was suffering heart failure was overwhelming. I cried almost constantly for 72 hours. You don’t imagine conditions like heart failure happening at such a young age, but quite obviously it does, for our family and many others.  

Lola was transferred to Birmingham Children’s Hospital, but she started deteriorating. She wasn’t getting enough oxygen so needed to be intubated before being put on an ECMO [Extra Corporeal Membrane Oxygenation] machine, pumping and oxygenating blood outside her body to ease the strain on her heart and lungs. It was the final thing they could do for her at Birmingham, before she was moved to the Children’s Heart Unit at The Freeman Hospital, over 200 miles from home in Newcastle.   

Lola was transferred by air ambulance, becoming the first patient on an ECMO ever to do that. I wasn’t allowed to travel with her, which was upsetting. We all used different modes of transport to get there, Rob by car after collecting things from home, while I travelled by train. I was quite distressed, but my sister Sophie jumped on at Leeds, which helped. We arrived at The Freeman ten minutes before Lola did, with Sophie seeing the helicopter arrive. We knew Lola faced a wait of months or even years for a donor heart to become available.  

Thankfully, we were given a place to stay at Scott House, a ‘Home from Home’ run by The Sick Children’s Trust located just two minutes away from where Lola was being treated. It was such a huge relief for us, being so far away from home. We couldn’t believe how lovely it was, and the staff there were so kind. The direct phone line from the room to the ward gave us real peace of mind when we needed some rest, knowing we could be immediately reached.  

Many of the families staying at Scott House were in a similar situation to us. I became close to a mum whose daughter also had dilated cardiomyopathy, and we really helped each other. We even exercised together, which was so good for our mental and physical wellbeing. Scott House became a real sanctuary, a place where you could catch your breath, away from the beeping machines on the ward. I don’t know what we would have done without it, especially as we didn’t know how long Lola would be waiting for a heart. 

On 9 April, just over nine weeks after being added to the urgent transplant list, a heart became available and Lola was immediately taken to surgery. It all happened so fast. We were told that it’s rare for a child as young as Lola to have been transplanted so quickly. Some of the children at The Freeman have been there for over a year now, just waiting for the right match, which is incredibly difficult for the parents. 

She was recovering from sepsis at the time of the operation so there were real concerns. However, five days after her heart transplant, she was up and about walking. We couldn’t believe it.  

We didn’t realise it, but the room we were staying in was the dedicated ‘transplant flat’. There was a locked door and we often wondered what was behind it. Seven days after the transplant, the door was unlocked and an amazing kitchen, lounge and dining space was revealed. It meant that when Lola was ready, she could spend some time there without mingling with other people, reducing the chances of picking up an infection.  

Lola absolutely thrived there. She’d stay over with us, sleeping in a travel cot between our beds. We’d spend most of the night watching her, checking she was okay, but it was wonderful. We’d have to go back to the ward for things like blood tests, and she hated it because of the freedom she’d experienced at Scott House – she wanted it all the time! I think the transplant flat helped massively with her healing process.  

Prior to bringing Lola home, I started to become anxious. I’d become reliant on the machines monitoring her, constantly aware of her heart rate and oxygen levels. I didn’t know how I’d cope without them. To give me confidence, they started to take the monitors off while Lola was in the cubicle before testing things out at Scott House, which eased my worries.

We had been looking forward to going home for such a long time. Now we are finally here it’s like ‘oh my goodness, it’s actually happened’.  Lola is doing ace, everyone is thrilled with her progress. She’ll eat now, which is a pretty big thing. She’s gone from refusing everything to waking up in the morning shouting for her breakfast! It’s a lovely change.  

We still go back to The Freeman for check-ups once a week up until 12 weeks after transplant. With it being a four-hour drive away, Scott House has again been there for us, providing a base when we’ve really needed it. We cannot thank them enough. 

Ella Watt, Lola’s mum