Brave Harry shares his story for World Heart Month
Tracie Brindley, a Primary School Teacher from Staffordshire, was pregnant with her son Harry when she was told the devastating news that he had a problem with his heart.
Harry was born with Shone's syndrome, a very rare congenital heart disease where many of the left heart structures are not formed properly.
Tracie explained: "Harry was born at Birmingham Women's Hospital and was transferred to the Children's Hospital at two days old. It was a very distressing time for us as we were so worried about him. However, the on-call Consultant Cardiologist Dr Mehta talked us through everything and the procedures Harry needed to have."
Tracie and Dad, Richard, were told that Harry had a critical aortic stenosis, which is the main body artery valve, which meant that Harry's blood could not flow properly. The next day, Harry underwent a keyhole procedure called a cardiac catheter to open the aortic valve with a balloon.
Tracie said: “Harry recovered well after the procedure but became very unwell a few days later.”
“All of a sudden, he was showing signs of heart failure and was quickly transferred to intensive care and put on life support. I get quite emotional talking about it as it was such an awful time, but all the staff in PICU were amazing. They saved Harry's life that night and looked after us all."
Due to how Harry presented, the team embarked on a rare and emergency open heart surgery to put bands around Harry's lung arteries, during the same surgery, his mitral valve was repaired.
At five months old, tests showed that Harry was ready for his next major operation. The team embarked on a rare procedure called a ‘hybrid surgery’ which had only been performed three times before at the hospital. This was to create a new circuit in his heart, which, although meant his heart would be ‘plumbed’ differently to normal, but it would still pump enough blood around the body.
The final open heart surgery, called the Fontan, which Harry underwent in 2017, was done to improve the oxygen flow in his body and to give him a more stable circulation.
Tracie explained: "It has been a very long road, during which we were constantly in and out of hospital, often with some long stays. We have had many very difficult times, and we have been so worried about Harry and what the future may hold, but we are so grateful that the Children's Hospital has such experts in cardiology who are willing to treat such rare and complex cases like Harry."
"We were so well supported by everyone on both cardiac wards and because of Ronald McDonald House we could all stay near Harry during his extended hospital stays. Even Harry's big sister Chloe, who wanted to be by his side, could stay with us. She could continue school at the hospital’s James Brindley school, who were so understanding of our situation. She was a rock for her little brother."
Since his major operations, there have been a few bumps in the road for Harry, who still attends the hospital for regular check-ups and appointments however Harry has a wonderful outlook on life and embodies the phrase ‘life is for living’.
Tracie said: "There's been some hiccups but for the past five years, but Harry has been doing great and is defying all odds. He is just the happiest boy on the planet. He wakes up every day excited for school and what adventures the day may bring."
Harry, who loves sports, has joined his local cricket team and will be starting high school in September.
Tracie said: "Dr Mehta, Harry’s Consultant Cardiologist, is his biggest inspiration, and as Dr Mehta likes cricket, Harry also started playing and is now captain of our local team."
Tracie added: "I think Dr Mehta might just be our favourite person on the planet. He's been supporting us through the highs and the lows, along with the whole team and, of course, Harry's surgeon Tim Jones, who we can't thank enough. Everyone is so lovely and so approachable that Harry just loves coming into the hospital for his appointments.
"We are just so lucky to have Harry and are so grateful to the team for saving him and giving him such a good quality of life despite the seriousness of his condition. Since his operations, Harry has been able to do what he loves and we've been able to go on holidays as a family and create those all-important memories."
Dr Mehta said: "Harry's heart condition does limit Harry's ability to tolerate physical exertion, but Harry defies all those assumptions and gives his best in school and sports. Harry is so well supported by his parents Tracie and Richard and his big sister Chloe in all his endeavours.
"I, along with my team at the Children's, would like to salute Harry for his bravery and his family for withstanding through all his treatment with a positive attitude and a smile."