Family of Wellingborough girl born with serious heart defect backing Rainbows Hospice's summer fundraising appeal

When Francesca Humphries 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 Irchester, have relied on the care and support from Rainbows Hospice for Children and Young People.

They are now supporting the charity’s summer fundraising appeal.

Thea arrived on Easter Sunday in 2019 at KGH 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.

Francesca said: “Thankfully Thea remained healthy and was booked in for her repair surgery in September 2020.

“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.

Francesca said: “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.

“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.

“Rainbows’ care has transformed Thea’s life, I know the difference Rainbows can make to families like ours and so I want to add my support to this appeal so that more local families can find their ‘Katie’.

"No-one is ever fully prepared to have a child with a serious condition. But, I can tell you from personal experience, if it does happen – you will want a Rainbows nurse to be there with you.”

Anne-Marie Rosak, head of nursing and family support at Rainbows, said: “We believe that Rainbows care should be available to every baby, child and young person across the East Midlands – whether they need us in hospital, at our hospice or at home.

"But we’re not reaching enough of them – and we need your help.

“We saw during Covid that many families didn’t know they could receive care and support from Rainbows.

"So, we placed Rainbows nurses directly into our local hospitals – two in Nottingham, two in Leicester and one in Northampton.

“Today, can you help us continue funding our existing nurses and to recruit two new nurses for Derby and Lincoln, where there aren't any specialist Rainbows nurses.

"Any gift you can give will help us reach more very ill children, transforming their lives and giving their families the expert care and support they so desperately need.”

To help Rainbows support children like Thea, visit rainbows.co.uk/appeal