Posts Tagged ‘Fetal Echocardiogram’

Five CHD Questions: Why?

May 13, 2010

Why are Congenital Heart Defects (CHDs) the least understood and the least funded of all the birth defects?

Despite being the birth defect with the highest rate of incidence, Congenital Heart Defects receive the least funding for research. One would think that this would be the target of massive funding, intense awareness campaigns, and major research allocations, but that is not so. In fact, it is one of the lowest.

CHDs is an “invisible disability” – we hide in plain sight. Other disabilities and illnesses have obvious signs, but the average CHDer can usually blend into a crowd with little trouble. Most of the time this is a good thing; I personally don’t prefer to stand out. One thing I write about on this blog and occasionally mention in a presentation is look at me – see how normal I am! But that also works against us as we can become lost in the shuffle.

When I was born there was no such thing as pre-natal testing; I was born on a Tuesday but it was Friday before my mother realized that there was probably something seriously wrong with me. Even today, a Fetal Echocardiogram is not standard procedure: an expectant mother normally receives this test only if her family has a history of heart defects or other factors come into play.

Despite what you may hear or read on the internet, CHDs are more survivable today than at any time in the past. A minimum of 90% of all children in the United States who undergo heart surgery survive to adulthood. And every year, the odds tilt more and more in our favor. There are currently about one million adults living with a Heart Defect and about 800,000 children.

With almost two million people living with a CHD, we’ve become our own little world. Survivors represent every gender, every race, and every age group. This diversity has led to advocacy groups of all types, such as the Adult Congenital Heart Association (ACHA), Hypoplastic Right Hearts (HRH), and Broken Hearts of the Big Bend. Every Survivor/Advocacy group serves a segment of our community and each one fills a need.

The members of the Congenital Heart Defect community are many and varied. But the one thing all segments of the CHD family needs is more awareness and better research. Because the goal of every Survivor/Advocacy group is to cease operations  because there is no need for their services anymore.

We’ll get there one day;


Importance of Fetal Echocardiograms

April 5, 2010

There is a new report out concerning Fetal Echocardiography. Printed in two parts, it appears in the February 2010 and March 2010 issues of the newsletter Congenital Cardiology Today.

The first part of the report is mainly a synopsis of how a Fetal Echocardiogram should be done and who should do it. While a non-fetal echocardiographer will know how to obtain a four-chamber view of the fetal heart, the slightest hint of a problem should trigger a Fetal Echocardiogram. Detecting a heart problem, should one exist, depends on the time of the Fetal Echo (18-22 weeks is the best time) and the experience of the echocardiographer. And when a child has a heart problem diagnosed prenatally, their chance of survival increases 50%.

In the second part of the report (Fetal Echocardiography II: Congenital Heart Defects and Management; March 2010 issue of Congenital Cardiology Today, p. 3) the author contends “The prevalence of congenital heart malformations is higher than previously thought and is about 3-4 per 100 live births.” That’s quite the contention, and the author cites a 2008 study titled Prevalence of undiagnosed congenital cardiac defects in older children as proof. The authors of the 2008 study only used a pool of 143 children, which is pretty small. The smaller the study pool, the easier it is to obtain inaccurate results. Another study used a pool of 19,502 subjects and obtained results closer to the generally accepted ration: 8.8 children out of every 1000 are born with a Congenital Heart Defect. Both article abstracts are online; click the links and decide for yourself which study is more likely to be correct.

Despite my misgivings about the number of children born with a CHD, the report emphasizes the fact that when a standard sonogram raises doubts about the heart of the fetus, a Fetal Echocardiogram is highly recommended.

Another look at Pulse Oximetery

December 2, 2009

There is a growing movement in the Congenital Heart Defect (CHD) family pushing for the inclusion of testing newborns with a Pulse Oximeter before being released from the hospital. Such a test would provide a fast, inexpensive way to determine if a CHD is present; if the situation warrants, further tests can be conducted.

Back in July I wrote a blog post about an article that appeared in the medical journals Circulation and Pediatrics that stated that Pulse Oximetery should not be supported as a routine test for newborns.

Many readers have misinterpreted that post, the Circulation/Pediatrics articles do not say that the PulseOx test should be discarded, but that more research is needed. (Very few readers click the links in each post, I do not know why. That’s where a lot of extra information about the subject can be found. And sometimes I just might surprise you!)

Seriously, let’s visit the subject of the PulseOx again for a few moments. It’s a pretty good idea – a quick reading of the child’s blood oxygenation level can be determined by a Pulse Oximeter (sometimes called a PulseOx). The test is quick (ten seconds at the most), painless, and inexpensive. Any blood oxygenation level reading below 90%¬† usually triggers a follow-up test: usually an Echocardiogram or an ECG.

While the medical journal article cites its own reason why there needs to be more research into the use of PulseOx, I can see one major flaw they did not mention: A PulseOx test can only detect a Cyanotic Heart Defect. And only about 25% of all heart defects cause Cyanosis.

So what we need, in my opinion, is overlapping tests: PulseOx combined with an Echocardiogram AND an ECG. And perhaps add a Fetal Echocardiogram for mothers who are in high risk groups.

But when you do all that, the CHD test for newborns is no longer fast, and certainly not inexpensive.

And the bad news is that even with overlapping tests, a few CHDs will still slip through. On May 4 of this year I blogged about Nick Heine, the police officer who died of an undiagnosed Congenital Heart Defect while answering a call. Nick had a problem in his heart’s electrical conduction system, and certainly he had undergone a complete physical exam before becoming a police officer. He probably had to have physicals all during his career, but that heart defect never showed itself until the instant it killed him.

So this is where research comes in. Keep looking at the results of the PulseOx; the more we know, the better we can make the test. Research will also make other medical procedures – of all types – better, faster, and less expensive. So perhaps one day there will be one single test, cheap, fast, and reliable, to determine if a child has a Heart Defect.

And until then, we work with what we have – PulseOx.