It’s been nearly a year since heart warrior Arthur underwent open heart surgery at Leeds. Today is his first birthday and his mummy and daddy look back at his journey so far…
We found out during Arthur’s routine 20-week scan at York Hospital that he had a heart condition and were referred to the Leeds Congenital Hearts team at Leeds General Infirmary. This is a situation that no expectant parent plans for and it is fair to say that our lives were turned upside down.
It was a blessing that we only needed to wait 2 days to be seen by Dr Brown and the team for a more detailed scan to understand exactly what was wrong with Arthur’s heart.
It was difficult for us to process what was happening but I remember this day vividly, not for the concern and worry but rather for the kindness and professionalism shown by the team – especially from Marie Wray who answered our many questions.
As mentioned, the 20-week scan had turned our lives upside down and we were left battling a range of emotions – sadness, despair, anger etc. but the wonderful team at Leeds Congenital Hearts had given us the confidence and faith that we would get through whatever came next.
By knowing that Arthur had an issue early in the pregnancy we clearly knew what the next steps would be and were then in regular contact with the team every step of the way until he was born.
Arthur was born at 8:56am on 22 June 2019 in Leeds General Infirmary and weighed 3.80kg. His conditions were Double Outlet Right Ventricle, Transposition of the Great Arteries, VSD and a Hypoplastic Aortic Arch. After being born he was able to spend a few minutes with his mum before being transferred to the Neonatal ICU to be assessed.
It soon became apparent that the Hypoplastic Aortic Arch was causing him the biggest challenge and he had a rough first night. He spent some time on a ventilator and had to battle through a couple of infections before he was able to go into surgery.
The day before his surgery his surgeon Miss Carin Van Doorn came to talk us through in detail what the surgery would entail. The conversation filled us with a renewed sense of confidence that Arthur would be fine and that he was definitely in the right pair of hands.
Arthur was fortunate that although his heart issues were numerous and complex, they were all fully repairable. The morning of his operation was a tense time, but we remembered back to the conversation with Miss Carin Van Doorn and the confidence this had brought us.
This was the longest day of our lives – 10 hours of surgery plus another 2 hours of emergency postoperative surgery in the PICU immediately after. By the end of the day Arthur was fully fixed.
After three and a half long weeks we were all finally back home in York, after temporarily relocating to Leeds General Infirmary. Arthur spent time in the Neonatal Unit, PICU and Ward 51 and finally a few days at York Hospital. All of the teams we dealt with were fantastic in the various locations where Arthur was treated.
This is something no parent ever wants to go through but it was made that much easier by the kindness and compassion we received along the way. Thank you all from the bottom of our hearts.
Since being at home Arthur has been doing great and we have just had the normal newborn baby challenges as first-time parents – it is like nothing had ever happened. He had his one year check up with the Leeds Congenital Hearts team at York Hospital a couple of weeks ago, which was managed very well given the COVID challenges, and we were pleased to hear his heart is doing great… In fact, it is doing so well that they do not need to see him again for another two years.
The work Leeds Congenital Hearts does on a daily basis changes lives for the better – both children and their parents. We cannot find the words to adequately express how they have changed all of our lives, so we will leave it as a thank you and ask that you keep doing what you do as it makes the world of difference. We also want to thank the support of Children’s Heart Surgery Fund who work tirelessly to support this life changing work.