Every year, 100,000 babies don't make it to their first birthday because of CHD.
CHD support

Our Heart Warrior of the Week is an adult CHD survivor by the name of Marina Puhalj! Marina is 17 years old and is living with unicuspid aortic stenosis and an aortic aneurysm which she was diagnosed with sometime after her birth. Marina has undergone two balloon valvuloplasties to widen her narrowed aorta. She has spent quite a lot of time in the hospital due to her condition, including pre-ops, surgeries, and follow-up appointments. She says she gets very nervous every time she has to go to the doctor because she fears getting bad news about her heart.  Due to her CHD, Marina takes Lisinopril in hopes of preventing her aorta from becoming enlarged. Doctors are unsure if this will be a lifelong medication until they are able to analyze if it has had a positive impact on her heart.

Although she has no surgeries scheduled at this time, there is a possibility for surgery down the road where her valve would be replaced. Because of her condition, Marina faces some restrictions; she’s not allowed to play any sports despite being an avid soccer and basketball fan. Although it is hard for her to sit on the sidelines, she enjoys working out with her twin sister. 

Marina describes herself as fun, energetic and creative. Although living with CHD can be a burden at times, she says she tries not to worry, but instead just lives her life to the best of her ability! She will be attending college in the fall to pursue a degree in graphic design, which is one of her biggest passions.

Marina is living proof that CHD doesn’t define the person; she hopes her story can provide a sense of hope and optimism for young children and families battling congenital heart disease.

About Marina’s CHD’s

Aortic Stenosis

aortic stenosis

Unicuspid Aortic Valve

unicuspid aortic valve

Unicuspid describes a valve with only one leaflet, a healthy heart has three.  Missing leaflets can cause a number of problems, including leaky valves an inefficient blood pumping within the heart. Aortic stenosis is one of the most common and most serious valve disease problems, it describes the narrowing of the aortic valve opening. AS restricts the blood flow from the left ventricle to the aorta and may also affect the pressure in the left atrium. While some have AS as a result of a congenital heart defect, this condition more commonly develops during aging as calcium or scarring damages the valve. Many people with AS do not experience noticeable symptoms until the amount of restricted blood flow becomes significantly reduced. Infants and children who have AS may exhibit symptoms such as:

  • Fatigue upon exertion
  • Failure to gain weight
  • Poor or inadequate feeding
  • Breathing problems

Aortic Aneurysm

aortic aneurysm

An aortic aneurysm is a bulge in a section of the aorta. Because the section with the aneurysm is overstretched and weak, it can burst.  Most aortic aneurysms don't cause symptoms. Sometimes a doctor finds them during exams or tests done for other reasons. Those who do have symptoms complain of belly, chest, or back pain and discomfort. The symptoms may come and go or stay constant.  About 4 in 100 men and about 1 in 100 women over the age of 65 have an aortic aneurysm. They are uncommon in children and young adults but those with CHD are more at risk.

Sources: webmd.com, heart.org

CHD Awareness

Comments

Estella Tarango

Estella Tarango said:

I just wanted to let ya know that we started following you on instagram under strykertarango because this two little angels both had heart problems… Barrett had open heart surgery when he was 6months old… But they are doing super amazing ?!!!

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