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Patient outside of Paul's House

Harri

15 May 2019, 9:04 a.m.
Patient Stories

When Kirsty and her partner Iestyn walked through the doors of Paul’s House, little did they know that they were about to become part of a very special community.

Our second home-from-home threw open its doors the very day their 10-year-old son Harri was admitted to Seahorse Paediatric Intensive Care Unit (PICU) at Bristol Children’s Hospital and they were thankful that they now had somewhere to stay whilst their brave boy recovered.

Harri and his family - Paul's House first family

Harri's family were the first to stay at Paul's House

Harri was just six weeks old when his family were first told he had multiple heart defects. His operation in 2018 was the latest in a long list of surgeries and treatments the now 10-year-old Harri had endured so far. Harri’s condition meant not only that his face, hands and feet often looked blue in colour but he got tired after physical activity and he struggled to eat.

Living in South Wales and making an already stressful situation even harder, Kirsty and Iestyn would have to sleep at the children’s hospital or take it in turns to make the long journey home to be there for their second son Alec throughout Harri’s initial diagnosis and first surgeries.

At 19-months-old and having reached his target weight, Harri underwent a procedure called a ‘Rastelli’ to correct some of his heart defects. Initially a success, the now 10-year-old Harri was given the news that following years of regular check-ups, the artificial pipe he was fitted with during his Rastelli operation, was now too small for him and didn’t allow enough blood flow for his growing body. He would need open heart surgery.

In less than two weeks, Harri was once again under the expert care of Bristol Children’s Hospital. Harri faced the prospect of yet more treatment with remarkable bravery, in fact, he was excited for his surgery to go ahead and to have a newly functioning heart. He had even compiled a list of questions to ask his nurses and had written a packing list for his stay in hospital – this was one prepared patient!

Patient after cardiac surgery

After Harri’s successful surgery and on his first day in intensive care, Kirsty and Iestyn were grateful to learn that they could stay at the newly opened Paul’s House and were the first family to do so. Giving them a much-needed space to rest, Kirsty and Iestyn could focus on helping Harri recover. More importantly, with the help of Paul’s House Kirsty and her family could stay together; Harri’s now nine-year-old brother had somewhere to sleep and their bedroom even looked on to Harri’s window in intensive care.

Harri's family - cardiac patient

Harri's family could stay together whilst he recovered thanks to Paul's House

Despite Harri's initial excitement about going into hospital, he was soon desperate to go home to continue his recovery.

“Harri really is an inspiration and the bravest boy we know. We are proud to call him our son.”

Kirsty

Mum

Luckily, Harri was soon back home and up to his usual tricks. This brave boy now faces a future of further operations but continues to feel positive. He has even used his condition to raise awareness of Congenital Heart Defects through giving presentations to his class, year and school as well as completing a whole host of fundraising activities!

We think Harri is incredible for having taken his situation and turned it into a positive, and as his mum, Kirsty says “we could all take a leaf out of Harri's book.”