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

Our Heart Warrior of the Week is a strong and inspirational adult CHDer by the name of Bianca Lucci.  She shared with us the many obstacles she has faced and overcome and we are honored to now be sharing it with you. This is her story, in her own words:

My name is Bianca Lina Lucci and I was born as a quadruplet on October 29, 1996 with a heart defect called Tetralogy of Fallot (TOF). When my heart condition was discovered before being born, a doctor told my mom, “One of your daughters is going to be born with a complex heart condition and this is what her life is going to look like.” He told a tale of surgeries, obstacles, restrictions, and a lowered quality of life. I may have had my fair share of surgeries and have definitely faced obstacles throughout my battle with CHD, but I’m proud to be proving that doctor wrong.

I have had two surgeries - one as a baby and one at the age of 16. I also had my sternal wires surgically removed at 21, and just last year I had a loop recorder implanted in my chest because I was experiencing fainting spells and premature ventricular and atrial contractions (PVC/PAC). Throughout my life I have spent a lot of time in the hospital.  In the past two years alone I have been admitted to the cardiology unit about six or seven times, and visited the ER over 40 different times. I’m currently on heart failure medication, aspirin, and beta blockers that are being tested on me to see if it helps my PVC’s and PCA’s.

I don’t face many restrictions due to my condition but I can’t lift weights and am unable to exercise how a normal person would because my heartrate skyrockets to about 200 BPM. I will likely have to have surgery every 5-10 years to make repairs on my heart.  I will also soon be getting a pacemaker or defibrillator to correct my PVC and PCA’s, which will be an additional surgery.

It is an everyday battle dealing with this condition. To not know what each day brings is exhausting both physically and emotionally. Doctors have been trying to diagnose my new heart problems and the recent discovery that I’m going into heart failure… it’s a lot to handle at such a young age.

About Tetralogy of Fallot

Anatomy: TOF is actually four heart defects in one, they include – ventricular septal defect (VSD), pulmonary stenosis, right ventricular hypertrophy, and an overriding aorta.

Ventricular Septal Defect (VSD)
The heart has an inner wall that separates the two chambers on its left side (left atrium & left ventricle) from the two chambers on its right side (right atrium and right ventricle). A VSD is a hole in the septum between the heart’s ventricles that allows oxygen-rich blood from the left ventricle to mix with oxygen-depleted blood from the right ventricle.

Pulmonary Stenosis
This defect involves the narrowing of the pulmonary valve, creating an obstruction when blood tries to flow from the right ventricle to the pulmonary artery to receive oxygen from the lungs. With pulmonary stenosis, the pulmonary valve cannot fully open.  Thus, the heart must work harder to pump blood through the valve.  As a result, not enough blood reaches the lungs.

Right Ventricular Hypertrophy
With this defect, the muscle wall of the right ventricle becomes enlarged due to underlying causes that put added stress on this part of the heart. 

Overriding Aorta
This defect occurs when the aorta, the main artery that carries oxygen-rich blood from the heart to the body, is displaced between the ventricles and directly over the VSD. 

Complications: With Tetralogy of Fallot, not enough blood is able to reach the lungs to get oxygen, and oxygen-poor blood flows to the body, resulting in dangerously low oxygen saturations. Pulmonary stenosis puts additional strain on the heart, resulting in it overworking itself which leads to an oversized right ventricle.

Symptoms: A bluish coloration of the skin (cyanosis), shortness of breath, rapid breathing, especially during feeding or exercise, fainting, poor weight gain, tiring easily during play or exercise, heart murmurs and tet spells (sudden development of deep blue skin, nails and lips after crying, feeding, or when agitated).

Treatment: Tetralogy of Fallot is repaired with open-heart surgery to repair all four defects. Additional surgeries throughout adolescence and adulthood are common to repair or replace the pulmonary valve.

Prevalence: This is one of the more common CHD’s occurring in 5 out of 10,000 live births.

*Some babies born with TOF have additional heart defects, like pulmonary atresia. With this defect, the pulmonary valve doesn't form correctly. Instead of opening and closing to allow blood to travel from the heart to the lungs, a solid sheet of tissue forms. Because of this, blood can't travel by its normal route to pick up oxygen from the lungs. In some cases, small amounts of blood are able to travel to the lungs through other natural passages within the heart and its arteries.

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