Atley's heart story - part one. The first two months; the first two surgeries.

February 14th is not only Valentine's Day, but also Congenital Heart Defects Awareness Day. Did you know congenital heart defects are the #1 birth defect and leading cause of infant deaths due to birth defects? I sure didn't until Atley was born.

As many of you know, my 9 year old son, Atley, was born with a very severe congenital heart defect called Hypoplastic Right Heart Syndrome due to the damage this defect causes to the right side of the heart. This heart defect left Atley’s right ventricle, pulmonary arteries and pulmonary branch arteries very small and underdeveloped (hypoplastic) because the right side of his heart did not develop properly in utero.

Even after four Level II ultrasounds, Atley’s severe heart defects went undetected until hours after his birth. Atley was immediately transported to Children’s Mercy Hospital in Kansas City, where he underwent open heart surgery shortly after birth to create an artificial connection (B-T shunt made of Gore-Tex) between the aorta and the pulmonary artery to deliver blood to the lungs. The left ventricle must take over as the sole pumping chamber for the entire heart, and the shunt allows for gravity to aid blood flow to the lungs.

Atley - 26 weeks gestation. You can see his heart in the ultrasound picture.

Because Atley was very unstable, had several strokes and heart attacks while on maximum life support, his doctors did not expect him to survive his first week of life. I was dismissed from the hospital quickly, as the doctors wanted me to visit Atley before his likely death.

Atley - 3 days old. We could only touch the top of his head because of all the equipment.

Atley was on 16 IV drugs, a ventilator, and more beeping alarms than you can imagine.

Not a beautiful newborn picture. Atley was swollen to twice his birth weight due to heart failure.

Atley's hospital recovery was very slow and compounded by Atley’s need for another heart surgery at one month old, and his severe ventilator dependence.

Atley - one month old.

I was so excited to hold Atley for the first time when he was 7 weeks old.

Atley finally came home from intensive care at Children’s Mercy at two months old, but his weakened condition, including brain damage caused by his strokes, led to complete reliance on a feeding tube and need for continuous oxygen.