Thea

When Francesca had her 20-week pregnancy scan, she discovered her baby had a serious heart defect and would need immediate care after birth.

Francesca and her partner, Martin, of Northamptonshire, welcomed Thea on Easter Sunday in 2019 at Kettering Hospital and was immediately transferred to the specialist Paediatric Intensive Care Unit at Leicester Royal Infirmary.

At just two-days-old, she underwent surgery to fit a shunt – a tube to replace her missing pulmonary artery that connects the heart and the lungs. This was a temporary measure to allow Thea to grow so that she could have her repair surgery. They were told that further surgery would be required by the time Thea was six to eight-months-old.

“Thankfully Thea remained healthy and was booked in for her repair surgery in September 2020,” said Francesca. “The temporary shunt was removed and an artificial artery was inserted to make up the missing artery and a big hole in her heart was closed. Thea however struggled to come off a ventilator and in October 2020 her right lung was found to be too ‘floppy’ and she was transferred to the respiratory team and remained in the High Dependency Unit to be weaned off a ventilator.

“As we were in the middle of Covid, I was the only person allowed to stay with her and we had no visitors. It was a really lonely time. The hospital staff were completely lovely and so supportive but they were so busy they just didn’t have the time to do anything other than the ‘medical’ things that Thea needed.”

Thea eventually went home in November 2020 but a few months later she was back in hospital.

“We met with our Cardiologist who examined her heart and told us Thea had multiple holes in her heart and was going into heart failure,” said Francesca.

“Thea was stuck in hospital, upset and frustrated, and we didn’t know what to do.

“Then we met Katie, the Rainbows Nurse at Leicester Royal Infirmary. Katie helped me with Thea’s care, was there to support me through some really difficult moments – like when Thea had her pacemaker fitted – and was just on top of everything. After two horrible, frightening, exhausting years it was incredible to meet someone who understood Thea’s care needs and also had the time to sit patiently with me and talk about Thea, and how we could plan for our lives ahead.

“Katie was a constant support for us in hospital while Thea gained her strength back. She made time to play with Thea and brought in a colleague who does music therapy, which Thea absolutely loved.

“She also suggested Thea might like to go to Rainbows for a little break from hospital. I have to be honest and say I shuddered when I heard the words ‘children’s hospice’. It didn’t seem to me like a place that would be right for Thea. But we knew and trusted Katie, so we went to Rainbows for our first look.

“And, oh my word; what a wonderful, fabulous place we found. We went for the day and we had the most brilliant time. Thea played with all the toys and we enjoyed some lovely meals together. The thing I remember most vividly, though, was the laughter – and it had been so, so long since we’d laughed together as a family.

“Rainbows are our lifeline and our friends. Thea is currently stable but requires constant care and she’ll need further surgeries in the future. But I can go to Rainbows and know that the staff there will care for her as well as I can and that she’ll have a wonderful time too. It also means that I get a few hours’ break from her care needs. She is my little girl and I would do anything for her, but her constant care needs do take their toll, physically and emotionally.”