Did you know that CHD Awareness Week has just started? Do you know what a CHD is? I must admit, I didn’t really before the little man above came along. Congenital Heart Disease. J was diagnosed with CHD within three days of birth. His heart condition is called Tetralogy of Fallot. A brief, simplified version taken from the British Heart Foundation’s booklet:
“In the normal circulation, blood passes through the lungs to collect oxygen In babies with Tetralogy of Fallot, the narrowing in the pulmonary valve and the thickened muscle below it mean that less bloodcan flow through to the lungs. This means that the level of oxygen in the blood is low.
Tetralogy of Fallot is a serious heart abnormality. There are two main problems: The pulmonary valve is narrow (pulmonary stenosis) and the muscle below it is thickened. There is a large hole – called a ventricular septal defect
or VSD – between the two main pumping chambers of the heart (the right and left ventricles).”
Infact for J, he also had another large hole called an atrial septal defect (ASD). He also has a right aortic arch with ‘unusual’ branching with lots of little bits that go nowhere. Make sense? Bit confusing really isn’t it unless you are a medic.
J had his ‘full’ heart repair at the tender age of five months old, weighing less than 11lbs. His operation lasted for eight very long hours and he remained sedated for 48 hours after surgery. Ten days later we were home and two months later he was pretty much healed physically. J will need further surgery at some point later on to have an artificial pulmonary valve put in. We don’t know when. It could be two years, or he could make it to adulthood before it happens. We are on nine monthly check ups at the moment.
There are many many different CHD’s and they are the most common type of major birth defect. More common than childhood cancers. Yet people are less aware. I have met many truly inspirational heart families in the last two and a half years and J’s CHD will always be a part of our lives. He will need life long check ups and I don’t know yet how many valve replacements. I hope not many in his life. I hope technology will move on in the future so that it won’t always be open heart surgery for valve replacement. I hope it will be keyhole! We will just have to wait and see.