Discovering a Heart Defect

Life goes on after discovering a heart defect – make sure you do, too.

You may have heard that Heart Disease is the leading cause of death for men and women in the United States. This fact actually applies to acquired (meaning you developed it over your life) heart disease – not something you’re born with.

Have you heard of congenital heart disease?

Congenital means you’re born with it (and the it is usually a defect) – so for congenital heart disease, the heart may be formed improperly or some part of the heart is placed wrong. Maybe the blood vessels, or the valves/chambers, or there may even be a hole in the heart.

Did you also know that heart defects are the most common birth defects?

Almost one in 100 babies are born with some kind of heart defect.

BUT – Not all defects are caught in infancy.

In fact, many aren’t, and people grow up to be adults not realizing they have something wrong with their heart that could be life-threatening.

This hit close to home with our family.

Prince Charming (PC for short) was having some weird symptoms at age 37. He felt dizzy and like he suddenly couldn’t breathe, but he doesn’t have asthma or any lung problems, and he doesn’t smoke. He also had chest pains.

The urgent care doctor found nothing wrong – tested for asthma, did an EKG. Things looked fine.

The cardiologist and internal medicine doctors put him through more tests and found nothing wrong. More EKGs, Echocardiogram, stress test.

He even went to an Ear, Nose, and Throat doctor – nothing.

Last-ditch effort – at age 38 he was sent for a heart catheterization.

When we arrived at the hospital, they sent us up to the OR, but no one was waiting for us.

At last someone came walking down the hall and asked us what we were looking for.

“The place where you get a heart cath,” we replied. The worker, who looked like a doctor, was skeptical, thinking we got it wrong. After all, PC was in his 30’s, not his 70’s, which is the usual age for a heart cath.

He asked PCs name, looked at the sheet the registrar gave him, and went into the OR to ask someone for further help. Another person came out and they also didn’t believe us.

FINALLY – the cardiac catheterization personnel arrived for their shift – apparently late. They WERE expecting him, and the other people were able to resume whatever they were doing, realizing that yes, this 30-something male was having a heart catheterization, after all.

Do you know what the results showed?

That’s right.

A heart defect.

PC was apparently born with a blood vessel that, rather than going AROUND the heart like it was supposed to, was routed THROUGH and in-between the pumping chambers. When his heart filled, it cut off the blood going through that vessel – which was one of the vessels that pumps blood to the brain!

Open-heart surgery, here he came.

He had to have a coronary artery bypass at age 38, so he wouldn’t suddenly…um, you know. Come to his ultimate demise randomly in the street or whatever.

The worst part – they told us it could be inherited, and that we should have the kids get checked out by a pediatric cardiologist.

Thankfully for us, PC followed up with a cardiologist for a year, and then his heart medicines were removed and he was released from care. He didn’t have any residual effects, nor does he need more surgeries.

Unfortunately, that isn’t always the case with many people born with a heart defect.

Many need more procedures done, extra medicines, and have more than one issue.

PC had the shortness of breath.

Other common symptoms in adults to watch for (2):

• Not being able to exercise like you used to
• Low oxygen blood levels
• Heart feels like it’s skipping beats (palpitations)
• You are easily tired
• Swelling, waking up short-of-breath (these are signs of heart failure)
• Skin/lips look blue

(Obviously, you could have some of these and not have a heart defect, so it’s best to get it checked out.)

Compared to the general population, adults with heart defects have 3-4 times higher rates of emergency room visits, hospitalizations, and intensive care unit stays. (1)

Let’s hear from an expert at the Mayo Clinic in Rochester.

This video is a few years old, so the medicines he mentions near the end are already available in the USA.

Here’s the encouragement for you:

It’s important to stay positive and be active in care and treatment, whether you find out as an adult or you’ve been living with a known heart defect since childhood.

9 out of 10 children diagnosed live into adulthood, and most adults diagnosed are living fulfilling, productive lives. (2)

Here are a couple more real-life stories of people who have been diagnosed:

As you can see by these people’s stories, if you’re diagnosed, it’s important to make sure you continue to go to the experts for your condition and follow their instructions so you CAN live that full life.

Some adults continue on with their pediatric doctor team, as they are the congenital heart defect specialists around and they already have confidence in their doctors.

Learn more about Congenital Heart Defects at the following sites:

The Adult Congenital Heart Association.

Call 888-921-ACHA or visit www.achaheart.org.

The Adult Congenital Heart Association supports adults with heart defects in various ways. They have a blog, do walks to raise money and awareness for the cause, trainings for patients, trainings for cardiologists, volunteers advocating in Washington DC to the lobbyists, fundraisers, and they also fund research.

CardioSmart

www.cardiosmart.org

This is a site by the American College of Cardiology. They link to ACHA and other helpful websites, and also have downloadable fact sheets and information on their blog.

References:

1. Adult Congenital Heart Fact Sheet, www.achaheart.org
2. www.cardiosmart.org, Understanding Congenital Heart Defects into Adulthood

Do you have a story to share about your experience with your own or a friend/relative’s life after discovering a heart defect?

Discovering a Heart Defect