Kevin's journey is one filled with immense challenges, incredible resilience, and love. From his very first moments of life, it was clear that his path would not be an easy one. Born at 36 weeks, Kevin entered the world under difficult circumstances, with both his mother Rahnesha and himself facing drops in blood pressure that required an emergency C-section.

The family was already aware of the risks associated with his pregnancy due to his known heart complications. But when they learned that Kevin had a congenital heart defect, specifically Tetralogy of Fallot with Pulmonary Atresia and MAPCAs (Major Aortopulmonary Collaterals), they were faced with the sobering reality of the battles their newborn would need to fight. Tetralogy of Fallot is a combination of four heart defects that affect blood flow, and pulmonary atresia (where the pulmonary valve doesn’t form properly) complicates this further, leading to insufficient oxygen in the blood. MAPCAs refer to abnormal blood vessels that develop to compensate for a blocked or absent pulmonary artery.

Despite the overwhelming nature of this diagnosis, Kevin’s parents refused to let the odds dictate his future. They sought out the best medical care available, traveling all the way to California to consult with a leading heart surgeon who specializes in complex congenital heart conditions. This decision to go the extra mile for Kevin’s treatment proved to be pivotal, as it ensured he received the very best care from a team of doctors who were highly experienced in performing life-saving surgeries for babies with conditions like Kevin’s.

What followed were likely some of the most difficult days for Kevin’s family—long hospital stays, surgeries, and ongoing medical interventions. Yet, Kevin's resilience, along with the support of his loving family, gave them the strength to face each new hurdle.

But Kevin’s journey didn’t end with heart surgery. Along with the heart condition, Kevin was later diagnosed with 22q11.2 deletion syndrome. Kevin’s 22q journey is a testament to the power of love, the importance of expert care, and the unyielding strength of a family that refuses to give up on their child, no matter how difficult the road ahead may be. His story is not only one of survival but also of growth, hope, and an unbreakable bond between him and his family, who continue to stand by him through every challenge.

This episode was recorded on October 4, 2023

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Within this episode we discussed:

• Tetralogy of Fallot (teh-TRAL-uh-jee of fuh-LOW) is a rare heart condition that is present at birth. That means it's a congenital heart defect. A baby born with the condition has four different heart problems. These heart problems affect the structure of the heart. The condition causes altered blood flow through the heart and to the rest of the body. Babies with tetralogy of Fallot often have blue or gray skin color due to low oxygen levels.

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• Pulmonary atresia with ventricular septal defect (PA/VSD) and major aortopulmonary collateral arteries (MAPCAs) is a rare and complex congenital heart defect that can lead to pulmonary obstruction

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• Dr. Frank Hanley - Stanford Medical

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• Pepin Academies special education schools offer comprehensive programs tailored to students with learning disabilities in Tampa, Florida.

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