Every now and again I will mention this book, because I think it is so useful and important. I own a copy, but I am not affiliated with the publisher. I’m not earning anything if you choose to purchase this book.

A book that I highly recommend for any heart family is The Illustrated Field Guide to Congenital Heart Disease and Repair. This book is a great guide to Congenital Heart Defects – the book lists 35 separate defects – and the operations used to correct them. There are also chapters on Echocardiograms, Electrophysiology, common cardiac drugs, and catherizations.

There is a little bit of Doctor-Talk in the text – an experienced patient or heart parent won’t have any difficulty with the terminology, but someone entering the CHD world for the first time may have a little bit of trouble understanding it. This really isn’t a problem, since there are many diagrams – you can see what you may not be able to read!

There are two versions: The pocket sized version is 4 inches by 7.5 inches, small enough to slip into a purse. It’s a little big for your pocket, but a man could carry it between their belt and the small of their back. A wire binding allows the book to lay flat on a table.

The larger version (7 inches by 10.5 inches) has a little bit different content that the smaller version. The Large format contains a section of “abandoned” heart surgeries – the Classic Glenn Shunt and the Waterston Shunt are two examples. Other than that, the two books have the same content. It also has a wire binding.

You can purchase the Guide here. Both versions are available, but do not let the need for a purchase order scare you (or the $200 minimum order for a purchase order, either!) This company sells a lot of items to doctors offices and hospitals, situations where a purchase order is needed. But they also sell retail, and have no problem sending you one copy of anything. Apparently they recognize the fact that there are a lot of non medical people who need information about Heart Defects. (Good for them!)

They also sell The Illustrated Guide to Adult Congenital Heart Disease. A friend tells me this book is very informative, but I have never seen a copy, so I can’t recommend it.

But I have used the CHD Guide, and I highly recommend that book!

When I (or anyone else) speaks of the number of Congenital Heart Defect (CHD) cases in the United States, where do we get our numbers? And how do we know they are accurate?

An accurate estimate relies on two factors: Reliable numbers and good math. I usually start with the estimate provided by the American Heart Association. That number has changed recently: They now report that out of every 1000 births, 9 will have some form of Congenital Heart Disease. (1 defective heart per 111.111 births; 1000 divided by 9 equals 111.111) We can confirm that number by looking at data from other Heart Health organizations; in this case, most of the other prominent organizations – including the March of Dimes – contend that the correct number is 8 in 1000. (1 defective heart per 125 lives births; 1000 divided by 8 equals 125.0) So for the moment, we’ll stick with 8 in 1000, which is the number I have been using.

Which brings us to our first question: Why does the American Heart Association feel that the number is higher? Are there more heart defects occurring? Or are doctors getting better at detecting them? That’s a question I don’t have an answer for – and something to investigate later.

So if we accept that 8 children in 1000 are born with a CHD, how many is that per year? Now we need good math – The United States Bureau of the Census reports that on average, there is 1 birth every 7 seconds in the United States. Since we know there are 86,400 seconds in a day, there must be 12,343 people born every day. 12342.857 people to be exact, but since you can’t have 0.857 of a person, you round up all fractions.

8 out of every 1000 births can be converted to a decimal number: 0.008. Total number of births divided by the occurrence of heart defects (12,343 multiplied by 0.008) means there are an average of  99 people born every day with a heart defect. (98.744, to be exact)

Remember, we’re still assuming that 8 out of every 1000 births has a heart defect. Let’s assume for the moment that the American Heart Association is correct and say that 9 out of every 1000 live births has a CHD.

That doesn’t change the birth rate (1 every 7 seconds) or the number of seconds in a day (86,400), so we can still use those original numbers. The number of people born every day won’t change, it is still 12,343, and 9 in 1000 converts to 0.009, obviously. 12,343 multiplied by 0.009 equals 112 people per day. (111.087)

99 people vs. 112 people. The difference 1 person per 1000 can make is astounding.