Carson, born 2008

Carson was born on November 1st, 2008. During a final newborn assessment, the nurse noticed a problem with his color and he was taken to the special care nursery to be evaluated. He was having problems maintaining his oxygen saturation levels, and she suspected a problem with his heart or lungs. The nurse called in a neonatologist and a cardiologist to perform an echocardiogram and chest x-rays on Carson. After an hour or two of waiting, we got the news that neither of us expected. Carson had been born with several severe heart defects.

 

He was born with a single ventricle, transposition of the great vessels, severe pulmonary stenosis and dextrocardia. The doctors told us that there was no way that Carson would be a candidate for a heart transplant because there are not enough hearts to go around and he made a better surgical candidate. They told us that Carson would need to be transported to Cincinnati Children's Hospital for further evaluation and surgery. When we arrived at their ICU, we were told that Carson would need to have surgery when he was three days old and would need to have a BT Shunt placed in his pulmonary artery. Carson's surgery lasted between 60 and 90 minutes and he recovered quickly with the exception of a few more hospital stays in the first few months of his life. He had some complications from the surgery, where fluid accumulated around his heart.

 

In April 2009, when Carson was about five months old, we went to see his cardiologist. We had some concerns about his decreased feedings, inability to gain weight, lack of energy and labored breathing. During the echocardiogram, his cardiologist realized that Carson's atrial septum was greatly narrowed. He immediately sent us to Cincinnati Children's for a sedated echocardiogram and a heart catheterization. When we arrived at Cincinnati, Carson's oxygen levels were at an all-time low of 55%. The cath lab performed the echocardiogram that day and the heart catheterization the following day. After the heart cath, they informed us that surgery would be the next day. In addition to the atrial septectomy, they would also go ahead and complete the Bi-Directional Glenn procedure so they wouldn't have to open Carson's heart twice. The surgery took about 6 hours. During the surgery, the surgeon stopped Carson's heart for 10 to 15 minutes and he was placed on the heart and lung machine. Overall, the surgery went very well. Carson stayed in the CICU a little longer than the first surgery, so that they could monitor his pain. He was discharged after 1 1/2 weeks.

 

We have a child who is so strong and determined. He's inspired us to be brave, to have faith and to go through life with a smile on our faces. We are so grateful for a beautiful gift called Carson and for every moment that we share with him.

 

Story by Carson's mom, Leah - Ohio