Best Care Anywhere!

In the CBS TV show M*A*S*H*, there was a banner hanging in Rosie’s Bar that read:



If you are an adult with a Congenital Heart Defect, this is what you need. No, not Hawkeye Pierce and B.J. Hunnicutt cracking jokes and curing you in 30 minutes; you need “the best care anywhere.” After all, you have an unusual heart that has probably been altered by at least one surgical procedure. You have reached adulthood and are beginning to ask questions that perhaps your pediatric cardiologist can’t answer. You are interested in starting a family, but aren’t sure if your heart is strong enough for pregnancy. You’ve got questions about your heart and you need better answers.

You very well may need an Adult Congenital Heart Defect Cardiologist. The way I look at it, my heart presents a set of unique problems that not everyone can deal with. It’s not that I want, but rather I need medical services that are hard to find.

So where does an adult CHD’er start? A good starting point is the American College of Cardiology’s 32nd Bethesda Conference Report. In 2001, a group of Cardiologists were called together to study the problems faced by adults with CHD’s and make recommendations on how to best serve this group. The ACHA provides a summary page of the meeting, but a better thing to do is to read the entire report. You can download the report as a PDF file here. Give it some time to download; it’s pretty detailed. At the same time, it’s pretty readable. And it is almost a must read for ACHD’ers.

Bethesda 32 groups heart defects into three groups: Simple, Moderate, and Complex. Simple defects — there are “simple” defects, the report cites several — can usually be monitored by the general medical community. As an example of a “simple” defect, consider the Patent ductus arteriosus I mentioned in an earlier post. The Ductus Arteriosus is designed to disconnect itself and close shortly after birth. Sometimes it doesn’t, and doctors have to disconnect it manually. Since it was supposed to disconnect anyway, once the connection is severed it shouldn’t be a problem anymore.

Those with Moderate or Complex heart defects need lifelong medical care and under ideal conditions they would be routed to regional Adult Congenital Heart Defect centers as they reached adulthood. Nothing is ideal; a Google search for “List of ACHD centers” causes Google to ask if I’m looking for ADHD (Attention-Deficit/Hyperactivity Disorder) centers!

This is one of the many benefits of joining the Adult Congenital Heart Association. Membership is free, and we maintain a list of Adult Congenital Heart Defect centers. If you feel you need a ACHD center (or you fit the profile in the Bethesda 32 Report) search the list and find one that appeals to you.

Be prepared to travel. There isn’t an ACHD center in every state, unfortunately; or perhaps the one 300 miles away seems to meet your needs better than the one 75 miles away. One of the best ways to make a quick evaluation of a center is to see how many patients they see: Experience, after all, makes you better at what you do. You wouldn’t expect to find an expert in hypothermia in Florida, and the National Weather Service isn’t going to put their best Hurricane expert in Montana.

If you are an adult with a Congenital Heart Defect, you need a more advanced level of care than most doctors/hospitals can provide. So download the Bethesda 32 report, read it, and find a good ACHD center. Make an appointment. And get ready to live… you life is not over, not by a long shot!

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