Heart Failure…. Dilated Cardiomyopathy…. Myocarditis…. Day 2 Heart Kids Sweetheart photo challenge

Day 2 @heartkids #sweetheart photo challenge.

Today is about CHD facts and I would like to raise awareness of heart failure and some of the underlying disorders that can lead to heart failure. I knew very little about all of these disorders or conditions prior to all of these words being used in reference to Audrey’s heart.

I now know that Audrey died of Dilated Cardiomyopathy, most likely due to viral myocarditis. With the genetic information that the wonderful people at Victorian Clinical Genetic Services (VCGS) have thus far, it is suggested that there was no underlying genetic condition, but who knows what we will know in 10 years. Therefore, the scales tip more towards that it was a cardiotoxic virus that caused her to have Dilated Cardiomyopathy. Autopsy results show that she didn’t have croup; in fact her upper and lower airways were clear. So why was she admitted to the hospital for croup and not heart failure???

I could say so much about how this question keeps me up at night, but this is about awareness. I want to arm parents with the knowledge and the power to ask questions, to know the simple tests that the doctors can do to assist with differential diagnosis that could save a life.

What is Heart Failure??

As you all can probably guess, in a nutshell heart failure is when the heart stops pumping effectively, which in turn means that the rest of the body doesn’t get the required amount of oxygen and other good things the blood sends around the body (Ref 1).

The symptoms of heart failure include basic things like difficulty feeding, difficulty breathing including a high worker breathing rate (Ref 1), swelling of the limbs, and fatigue (Ref 2, see the pic). These symptoms are all similar to croup, asthma, pneumonia or any other respiratory illness out there.

So how can we expect doctors to get it right? Well, a simple chest x-ray can show an enlarged heart. This isn’t necessarily the best tool for diagnosing heart failure, but it’s a non-invasive method that can help make an informed decision about not only heart condition but also many other types of respiratory illnesses. The RCH website talks about the use of x-ray to diagnose heart problems (Ref 3) but not when performing differential diagnosis of respiratory symptoms. It would be amazing if this changed. A simple chest x-ray could reveal so much in aiding differential diagnosis.

acute heart failure diagram
Figure: Signs of heart failure

Another tool to assist in diagnosis is blood pressure. In adults low blood pressure can assist with the diagnosis of heart failure, however in children it can be tricky. Children have an amazing ability to regulate blood pressure. Nevertheless, this is a non-invasive tool that should be mandatory when anyone presents to the emergency department.

The new ViCTOR charts rolled out in Victoria have done just this. These new charts use blood pressure as a core feature for diagnosis. I urge everyone to check out these new charts, they based on wonderful research by some inspiring Doctors at our own RCH. These new charts are amazing and will hopefully help Nurses and Doctors feel more confident in activating MET or Critical team reviews (http://www.victor.org.au/).

So what can cause heart failure??

We all probably know what the most common cause of heart failure in adults– coronary heart disease, but children probably don’t have the exposure to the same environmental factors that adults do, so it gets tricky.

One of the most common causes of heart failure in children is Dilated Cardiomyopathy (Ref 4, basically meaning the heart becomes so enlarged in can’t pump anymore, it loses its elasticity, like a half deflated balloon) and one of the main causes of Dilated Cardiomyopathy is Viral Myocarditis. Basically this means that a virus became toxic to heart muscle which causes the heart to not pump properly.

Approximately 1.24 children per 100,000 children will be diagnosed with Dilated Cardiomyopathy in Australia (Ref 4), with similar incidence rates reported in other studies overseas (Ref 5-8). The death rate in children is much higher than adults, but the incidence is lower (Ref 4-6).

So what are the take home points?

  1. Some viruses can end up attacking heart muscle. This isn’t just in children, but adults too (so remember about your symptoms).
  2. Shortness of breath and being lethargic are not normal, take yourself or your loved one to the hospital.
  3. Always ask doctors for differential diagnosis, a simple x-ray could have saved Audrey’s life.
  4. Always ask questions of doctors, if you are concerned make a fuss. Jump up and down, demand a MET call or Critical team review.

I cannot stress the last two points enough. I was called a paranoid parent from a Doctor in the 6 months leading up to Audrey’s death. How wrong that Doctor was.

All through Audrey’s file from the hospital is “parents concerned how lethargic child is”. I should have demanded a critical team review, I know that now. Please don’t make the same mistake as me, trust your maternal or paternal instinct it’s usually right.


All fact, statistics definitions are based on peer reviewed literature or credible websites. I will reference the articles or websites I have used and if anyone wants copies I can supply these or I encourage everyone to use “Google Scholar” in combination with “Google” when wanting to find out any health related information.


Ref 1 – Ross, R.D., Bollinger R.O., & Pinsky W.W. (1992). Grading the Severity of Congestive Heart Failure in Infants. Pediatric Cardiology, 13, 72-75.Ref 2 – https://www.nhlbi.nih.gov/health/health-topics/topics/hf/signs
Ref 3 Heart Problems in Children http://www.rch.org.au/kidsinfo/fact_sheets/Heart_problems_in_children/
Ref 4 Nugent A.W., Daubeney, P.E.F., Chrondros, P., Carlin J.B., Cheung, M., … Weintraub R.G. (2003). The epidemiologyof childhood cardiomyopathy in Australia. New England Journal of Medicine, 348, 1639-1646. doi: 10.1056/NEJMoa021737
Ref 5 Daubeney, P.E.F, Nugent, A.W., Chondros, P., Carlin J.B., Colan S.D., … Weintraub R.G. (2006). Clinical Features and Outcomes of Childhood Dilated Cardiomyopathy: Results From a National Population-Based Study. Circulation, 114, 2671-2678. DOI: 10.1161/CIRCULATIONAHA.106.635128
Ref 6 Towin, J.A., Lowe, A.M., Colan, S.D., Sleeper, L.A., Orav, J. … Lipshultz S.E. (2006). Incidence, Causes, and Outcomes of Dilated Cardiomyopathy in Children. JAMA, 296, 1867-1876. Doi: 10.1001/jama.296.15.1867.
Ref 7 Lipshultz S.E., Sleeper, L.A., Towbin J.A., Lowe, A.M., Orav, E.J., … Colan, S.D. (2003). The incidence of Pediatric Cardiomyopathy in Two Regions of the United States. The New England Journal of Medicine, 348, 1647-1655.
Ref 8 Arola, A., Jokinen, E., Ruuskanen O., Saraste, M., Pesonen, E., … Simell, O. (1997). Epidemiology of Idiopathic Cardiomyopathies in Children and Adolescents: A Nationwide study in Finland. American Journal of Epidemiology, 146, 385-393.