FAMILY LIFELINE

Seeing her son Thomas, now 22, go off for this first day of university is something Sally Evans will never forget. “It was an unbelievable moment and my husband and I felt so proud. Thomas has been through so much but refuses to let that stop him from achieving his goals.”

Thomas was diagnosed with hypoplastic left heart syndrome – a congenital heart condition where the left side of the heart is underdeveloped so it can’t pump blood properly – before he was born. “When I went for a scan at 19 weeks pregnant, the sonographer told me she wasn’t able to see all four chambers of the heart so made me move around a bit, but when she tried again, she still couldn’t see them all,” remembers Sally. She was sent to the obstetrician, who said they didn’t know if the baby was viable. “I just thought, ‘This can’t be happening.’ It had taken us a long time to get pregnant and our son Joe, then three, was desperate for a brother or sister.”

Sally and her husband were given three options – they could terminate the pregnancy straight away; have the baby and let nature take its course; or opt for treatment, which would involve three staged open-heart surgeries to improve heart function and blood circulation. “We knew straight away we would go for the surgery, as we just wanted to give him the best chance at life. We were scared and the rest of the pregnancy was very difficult.”

Thankfully, Sally was given the details of Little Hearts Matter – a charity offering help to anyone affected by the diagnosis of single ventricle heart condition – by the consultant.

“We got in touch with the charity straight away and they gave us lots of information and invited us to their upcoming open day at West Midlands Safari Park, which my mum and I attended. It was amazing to meet other parents and see children who had the condition, who were just normal children having fun.”

In January 2004, Thomas was born through an elective C-section. “He was transferred to Birmingham Children’s Hospital straight away. The doctors don’t know until they’re born how well the heart is going to function because, while they’re inside you, your blood supply keeps them going. They quickly realised his heart wasn’t working very well. He had to go on lots of medication to keep his heart going, then have surgery two days later.”

Thomas made a steady recovery and they were able to go home three weeks later. Over the next few years, Thomas had more procedures. “He had a few cardiac catheters, which is a procedure where they can go in through the groin and they can do various things like put stents in. He then had his final planned big operation when he was four years old. That didn’t quite go to plan and he was really poorly – we nearly lost him. He had to have more cardiac catheters after that, then at nine years old, he picked up and has since been more stable.

One thing that has helped Thomas and his family is the support of Little Hearts Matter. “Since that first open day I attended, they have continued to be a lifeline. They have given us emotional and practical support with things like applying for Disability Allowance and Personal Independence Payment (PIP), and have put us in touch with parents who have had similar experiences. My parents are in a group with other grandparents, and Thomas has been to some of the charity’s activity weekends for people with his condition, where they are able to do things like zip wires and climbing walls in a safe environment with a doctor and nurse present. The weekends have been real confidence boosters and we notice a change in Thomas when he comes back from them.

“The best thing was being provided with a community who understands. I think of it as like being on a train on your life journey with all your friends going through similar things, then from the day of diagnosis we were put on a different train. Little Hearts Matter gave us a community of people who were on the same train as us. We could see our friends through the window doing the things we wanted to do, we were now with a group of people who understood and who we were able to have fun with. I can’t imagine how we would have navigated this journey without them.”

THE CANDIS BIG GIVE FUNDRAISING TARGET: £12,000

• Each year, up to 500 babies are diagnosed with a single ventricle heart condition, or half a working heart, which is an incurable condition. Little Hearts Matter supports and empowers anyone affected by this devastating diagnosis.
• It will use the money raised in the Candis Big Give to fund the charity’s Little Lives Appeal, which provides comfort and support, helping families of babies diagnosed with half a working heart, who face immense challenges including complex surgeries, uncertainty and long hospital stays.
• The charity will provide one-to-one support to families from their 20-week scan, helping them understand their child’s condition and treatment options, and ensuring access to medically verified resources, antenatal packs, and its trained parent volunteers.
• It aims to build resilient networks through its family symposiums, closed Facebook group, and peer support. These connections are vital for coping and emotional wellbeing.
• 90 per cent of the families the charity works with tell them their mental health, decision-making and ability to cope improved after accessing these services. The funds raised will help the charity to reach more families.
• Visit lhm.org.uk or call 0121 455 8982 to find out more.