“Daithí, our first and only child, is a 16-month-old boy who loves playing with his cousins at his grandparents’ house in Cappagh and generally getting up to mischief! Seeing him do so well is something we don’t take for granted as Daithí’s first few weeks were difficult and he was gravely ill.
Our GP raised concerns at Daithí’s routine six-week check-up. He wasn’t thriving and we were referred to University Hospital Waterford where it was discovered that he had serious heart abnormalities and needed specialised cardiac care. An ambulance was immediately dispatched from Crumlin Children’s Hospital. Within a very short time of him arriving there, he was diagnosed with a complex congenital heart condition. An immediate treatment plan was decided and he required emergency surgery.
His diagnosis involved a coarctation (narrowing) of the aorta, which was forcing his heart to pump faster and reduced blood flow to parts of the body. He also had some holes in the heart (VSD’s) and has a bicuspid aortic valve. The first step was to repair the narrowing of the aorta and this was done the next day. We were amazed at the level of skill of the surgical team and thankfully all went ok. After two weeks we were discharged and had regular follow-up appointments to monitor the holes in the heart and to check the heart’s functioning.
Fortunately, the initial surgery corrected the direction of blood flow within the heart and the four holes in began to shrink and close over in time. We have avoided a second surgery to repair these thankfully.
Our appointments are a bit more spread out now that he is over the critical period. He continues to be monitored and his cardiologist is hopeful that he may avoid further intervention. We hope that this will continue to be the case.
We are hopeful that CHD won’t prevent Daithí from having a full childhood just like his peers. It is very reassuring to have Heart Children to help us navigate this and to know that there is a place and space for us to turn to when we feel like we would benefit from support and guidance. As he is only one-year-old, we are still early on in our journey with CHD but have already joined other parents on some of the webinars run by Heart Children and we keep informed about their upcoming events through their Instagram page and their monthly emailed newsletter. There is great comfort in connecting with other parents who have shared similar experiences and the events that Heart Children organise are a wonderful means of doing this”.
Sign up today to host your own Spring Coffee Morning and help us to raise funds for our vital support services for children born with congenital heart disease (CHD) and their families.
Register at https://heartchildrenie.enthuse.com/cf/spring-coffee-morning to get your fundraising pack or call Niamh on 083 0254580 for more information.
