Lillian

When Suzanne and Wayne learned at their 25-week scan that their baby girl would be born with a life-threatening heart condition, they were devastated. Treated immediately after her birth in St Michael’s Neonatal Intensive Care Unit (NICU) and then for weeks in Bristol Children’s Hospital, Lillian has been through a lot in the first few months of her life. But their miracle baby continues to be just that – and now, things are looking very hopeful for this loving family. Suzanne, Lillian’s mum, tells us her story.

“Five years ago, we were told we’d never have children – that my endometriosis would make it impossible. In 2023, just after a routine operation for it, we heard the most amazing news: I was pregnant. Then, at just 12 weeks, our two foster children, Anastasia and George, joined us. Very quickly, we went from having no children to having three.

Lillian, our daughter, is our little miracle baby. She’s a fighter and she’s everything. Just everything.

We found out about Lillian’s heart issues at our 25-week scan. We were devastated but no matter what the odds were, we knew we had a little warrior, and we’d love her regardless. She was born in St Michael’s Hospital and was transferred to NICU straight away to stabilise her. We were there for four days in total – I was an inpatient, too, while I recovered from a very difficult birth – and Cots for Tots put us up in Cots for Tots House, just across the road, where Wayne stayed. On day four I was discharged, and Lillian was moved to Bristol Children’s Hospital’s Dolphin Ward, the cardiac High Dependency Unit, which looks after children with heart issues. The Grand Appeal moved us from Cots for Tots House to Paul’s House, so we were still just minutes away from Lillian. 

We were told when Lillian was born that she had Transposition of the Great Arteries, which meant the main arteries in her heart were the wrong way round and she couldn’t pump oxygenated blood. Effectively, she was running on two separate circuits, and the heart wasn’t able to do its function. The arteries needed to be switched around, so she had open heart surgery at just 11 days old.  

Without the surgery, we would’ve only had a month with her. But it was successful and she’s doing so well now. She should lead a full and normal life. 

Everywhere we went we found lovely staff members who doted on Lillian. Everyone was enraptured by her and it was beautiful to see. I had a difficult, painful birth which involved forceps when Lillian’s heart started struggling, but we had some great people who helped us have a safe delivery. 

Initially, her heart surgery was moved because an emergency case came into the hospital suddenly. Lillian was fine until her lungs began overcompensating for the lack of oxygen her heart wasn’t able to pump. When her condition worsened, a wonderful surgeon cleared his schedule then and there to perform the surgery she needed and prevent the unthinkable. We are extremely grateful for this, and we will never forget the surgeons who stepped in and helped to save her life. 

There were some post-operation complications which meant they had to reopen her chest at 2am. It was terrifying, but the surgeon went the extra mile to check in and make sure she pulled through. He kept us informed and reassured us during the worst time of our lives. It helped more than words can express. 

That day was my first official Mother’s Day. I felt like a horrible mum because I couldn’t do anything to help my baby. But then, someone in the Paediatric Intensive Care Unit (PICU) wrote me a card ‘from’ Lillian, and gave me some beautiful flowers, and it was one of the most touching moments I’ve ever experienced. It still makes me cry whenever I think about it. 

There are some wonderful memories that stick in my head when I think about our time in Bristol Children’s Hospital. On the PICU, a lovely harpist from Arts Unleashed, The Grand Appeal’s arts programme, came to perform some Disney songs for the children on the unit. It was a beautiful moment. It was also so nice to see all her wires removed for the first time after surgery so we could put her in her first outfit.  

Everyone was so lovely and really acted like Lillian was a special little girl. People from different wards came to see her as they’d heard about ‘the beautiful little baby on Dolphin Ward’ and wanted to see for themselves. This made us, as parents, feel a lot more relaxed about the situation she was in because she had so many people giving her good wishes. 

We live in Powys, in Wales. It’s a two-hour drive to Bristol on a good day. One of our biggest concerns, after learning we’d need to be in Bristol for four to six weeks while Lillian got better, was how we would afford it. It gave us a lot of stress we didn’t need – Lillian needed the surgery, but how would we stay by her side? 

We’d stayed in Cots for Tots House while we were in NICU, but when we found out about the free accommodation available to us in Paul’s House, just across the road from Lillian, I cried. We’d have a home for as long as we needed, with huge convenience and little cost. We saved so much money not just on where we were staying, but food too, because there was a full kitchen we could use to cook instead of having to get takeaways. 

We still had two foster children at home, Anastasia and George. My dad had them throughout the week, so their schoolwork wasn’t interrupted, but it was so difficult. They were just starting to settle in and form a routine, and suddenly, Wayne and I had to spend months in and out of Bristol. 

Anne, The Grand Appeal’s Family Accommodation Manager, was amazing. Nothing was too much trouble for her. She gave us two extra fold-down beds so the kids could stay at the weekend. This was vital to us – it meant our foster children knew they were still an important part of our family, and we wouldn’t go weeks without seeing them. Anne really is an asset to Paul’s House, as are the wonderful housekeepers there.  

In fact, one of the lovely housekeepers was my rock for a while – when Lillian was in surgery, and I felt like I was falling apart, she always stopped to talk to me and make me feel better. I was so grateful to her. 

Wayne and I spoke to a few families who were staying there and we shared stories. It reassured us that we weren’t the only ones going through a difficult time and made us realise it could’ve been much worse. Other people’s success stories helped. Hearing others talk positively helped us see the light at the end of the tunnel. We felt so fortunate, and it put into perspective that although Lillian needs this surgery, she will be fine and lead a happy, healthy life.

Our little girl was fighting, and we couldn’t lose hope for her sake.

Paul’s House is so needed. Without it, I don’t think we would’ve been able to cope in such a trying time. It felt reassuring to be with other families who were going through similar journeys, so we could all go through the ups and downs together. It gave us a sense of community. The house was everything we needed both financially and emotionally, because it helped us focus on what was important: Lillian.  

We’re three months on, and Lillian is doing so well. Her heart surgery scar has healed nicely. She’s very active and alert and you can tell she’s itching to get moving. She’s holding her head up very well and trying to sit up already and is always babbling away. She’s going to be a chatterbox like her mummy. 

We are so proud of her – are we’re excited to see what the future holds for our perfect family.”