Every year, 100,000 babies don't make it to their first birthday because of CHD.
Gabe Duggan | CHD Awareness Week

We’re on day three of CHD Awareness Week!  Our Heart Warrior for today is Gabe Duggan and his defects are hypoplastic right heart syndrome (HRHS), atrial septal defect (ASD) and pulmonary atresia.  On April 30th, 2007, Gabe’s Mom, Christa, went to the hospital after her water broke at just 35 and a half weeks gestation.  Although Gabe was over a month early, Christa wasn’t too worried, she just thought her baby was ready to enter the world.  That lack of worry vanished when she was hooked up to the monitors in the labor & delivery room and mayhem broke loose.

Gabe’s heart rate was over 300 beats per minute, so Momma and baby were rushed into the operating room for an emergency c-section.  A few hours later, her baby boy was diagnosed with not one, but three congenital heart defects.  Throughout his battle with the disease, Gabe has undergone three open-heart surgeries, peritoneal dialysis, two catheterization procedures to dissipate his STV (rapid heart rate), a thoracic duct ligation procedure and a gastrostomy tube surgery.  Altogether, he has spent about one year in the hospital in his ten years of life.

Although he has already been through so much, Gabe’s journey is not over.  He will have to undergo another procedure to replace his pulmonary valve sometime within the next three years as he doesn’t have one at all right now.  In addition to his battle with CHD, Gabe was also diagnosed with a chromosomal disorder called 3q29 microdeletion syndrome at the age of two and a half.  At that time, his doctors said that there were only 30 reported cases in the world, today there are over 100.  Research is suggesting that there is a link between this type of chromosomal abnormality and CHD.

Gabe’s parents describe him as funny, strong, caring, sensitive and loving.

congenital heart disease

About HRHS

A congenital heart defect where the right ventricle of the heart fails to grow and develop, essentially the child is missing half of their heart.  Due to its lack of development, the right ventricle can’t hold enough blood pumped from the right atrium.  Because the muscle’s structure is lacking, additional problems occur as the heart attempts to pump blood to the pulmonary valve to be transferred to the lungs.  This CHD requires emergency medical treatment as the heart begins to fail almost immediately after birth.

Today, there are no methods to repair the underdeveloped ventricle, though the condition can be treated.  Surgeons use the Fontan procedure to bypass the right ventricle during the heart’s blood pumping process.  The Fontan procedure is split into two surgeries, the Glenn shunt and the Fontan completion.  Previously, the Fontan was all done in one procedure but doctors have found greater success rates when the procedure is split into two parts.  Within the first few days of life, the child will be given a temporary Blalock-Taussig Shunt that provides a temporary path for blood to reach the lungs.  At around three months old, the Heart Warrior will undergo the Glenn shunt; in this procedure, the superior vena cava is attached to the pulmonary arteries.  At three to five years old, doctors will connect the inferior vena cava to the superior vena cava.  Once the Fontan is done, the result is complete bypass of the right ventricle, so blood flows back from the body directly into the lungs.

This CHD is very rare, even more rare than hypoplastic left heart syndrome which occurs in 4 out of every 10,000 births

Source: chd-uk.co.uk

hypoplastic right heart syndrome