Every year, 100,000 babies don't make it to their first birthday because of CHD.
Megan Cauley | Heart Warrior of the Week

Our Heart Warrior of the Week is Megan Cauley! We talked with Megan about her journey with aortic stenosis and unicuspid aortic valve over the last 28 years, here is what she had to say:

What are your heart defects?

Aortic Stenosis, Unicuspid Aortic Valve

What is your date of birth?

05/02/1993

Were you diagnosed in-utero?

No, I was diagnosed at age 14

If you could describe yourself in 3-5 words, how would you?

Enthusiastic, creative, capable

How many surgeries and/or procedures have you undergone?

For my heart – 2. In total – 5.

What are the names or types of surgeries/procedures you have undergone and what was the purpose of them?

2014 – Aortic Valve Repair to temporarily correct my stenosis.

2020 – Aortic Valve Replacement with an On-X Mechanical valve in hopes of eliminating any future surgeries. Both completed through open sternum procedures.

Approximately, how much time have you spent in the hospital throughout your life?

I’ve had two stays for heart surgeries, one 4 days and the other 5 days. Countless appointments, tests, etc throughout the years.

Are you currently on any medications as a result of your heart condition?

Yes, I take warfarin, aspirin and a blood pressure medication.

Is it something you are temporarily taking or something you will have to take for the rest of your life?

The warfarin and 81mg aspirin will be for the rest of my life; as for the blood pressure medication, it is unclear whether I’ll ever be able to come off that one.

Are there any restrictions you face due to your condition?

I have suffered from pumphead syndrome – a constellation of neurocognitive impairments attributed to cardiopulmonary bypass (CPB) during cardiac surgery – since my most recent surgery.

Do you have any surgeries/procedures currently scheduled?  Or will there be a need for future surgeries/procedures?

We hope that with the mechanical valve I will not need any additional surgeries, but time will tell.

Are there any worries or challenges you have faced/continue to face being a CHD Warrior?

I worry about needing additional surgeries, or passing some sort of genetic defect down to my daughter. I worry that I won’t get to live my life to the fullest because my heart issues will always hold me back.

Please add anything you want to share that we didn’t cover!

I live in Ohio, I’m a mom, a writer, an animal lover, and I am passionate about all things heart health. I love meeting new heart patients and talking all about our heart conditions, experiences, symptoms, futures etc. Some of my very best friends have been made by connecting in our heart journeys.

About Megan's Heart Conditions

Aortic Valve Stenosis

Anatomy: The aortic valve, which connects the left ventricle to the aorta, is severely narrowed (stenosis) or missing altogether (atresia).

Complications: This abnormality restricts the blood flow from the left ventricle to the aorta and may also affect the pressure in the left atrium. As a result, the heart has to pump harder and the body is deprived of oxygen.

Symptoms: Fatigue upon exertion, failure to gain weight, poor or inadequate feeding, breathing problems.

Treatment: Options for aortic valve atresia/stenosis include medical management with medicine, valve replacement via open-heart surgery, or a balloon procedure via catheterization.

Prevalence: Aortic valve atresia/stenosis accounts for approximately 6% of all CHS cases, occurring in 3.8 out of every 10,000 live births worldwide.

Unicuspid Aortic Valve

Anatomy: Normally, the aortic valve has three small flaps or leaflets that open widely and close securely to regulate blood flow.  With unicuspid aortic valve , the valve often has just a small hole or no hole at all.

Complications: Because of this abnormality, the valve doesn’t function properly. This results in inhibited or leaky blood flow, which affects the overall heart function and leaves the body with low oxygen. Aortic aneurysms, heart infection, and narrowing of the aorta can also occur.  However, a unicupsid aortic valve may function adequately for months or years without causing symptoms or obvious signs of a problem. 

Symptoms: Shortness of breath during activity, dizziness, fainting due to lack of blood flow to the brain, and heart murmurs.

Treatment: Options include surgical repair or medications while some patients may not need any intervention at all.

Comments

Brittany Spilker

Brittany Spilker said:

Oh my word I would love to talk to Megan more to get any advice she’d be willing to give. My son was also born with Aortic Stenosis and a unicuspid valve. He has an asd, and efe as well and some stenosis in his Mitral valve.

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