Just days old, Ace Graham was diagnosed with a life-threatening heart condition

Ace’s coarctation of the aorta surgical repair was followed by a scary complication. Now he’s thriving and about to turn 2.

Ace Graham soon will celebrate his second birthday, an accomplishment that most families take for granted. But for his parents, T.J. and Allie Graham, and his extended family, each day is a blessing, and nothing is taken for granted.

Ace was born March 22, 2018, and everything appeared fine. He was healthy, and within a few days, was ready to go home. But at just 9 days old, Ace stopped eating, was very tired and running a temperature for no apparent reason.

“We knew this wasn’t normal for our child to change this drastically,” T.J. said.

Their baby boy was fighting for his life

The parents took Ace to the pediatric emergency room at Norton Women’s & Children’s Hospital. There, doctors ran tests and quickly discovered he had an issue with his heart and rushed him to Norton Children’s Hospital.

T.J. and Allie’s baby boy was fighting for his life at only a few days old. Ace would  have his first open heart surgery at just 10 days old.

Ace was diagnosed with coarctation of the aorta (CoA), a congenital condition in which the aorta is narrow and leaves the left ventricle to work harder. The aorta is the large blood vessel that delivers oxygen-rich blood to the body.

“There really isn’t a ‘normal’ for congenital heart disease. Some defects have a higher risk of complications than others, and the types of potential complications vary based on the defect or necessary surgery,” said Deborah J. Kozik, D.O., pediatric cardiothoracic surgeon with UofL Physicians – Cardiovascular and Thoracic Surgery and who was Ace’s surgeon at Norton Children’s Heart Institute, affiliated with the UofL School of Medicine.

Ace’s surgery would repair the narrowed aorta, a condition that once repaired requires lifelong follow-up. Ace seemed to be doing well and went home. But within 15 days of surgery, he started breathing heavily again.

His parents took him back to Norton Children’s Hospital, where a chest X-ray showed fluid around Ace’s lungs. It was a rare complication from heart surgery, called chylothorax.

“Chylothorax is a unique condition where lymphatic fluid, made of white blood cells, leaks into the space between the lung and chest wall,” Dr. Kozik said. “When the fluid builds up in the lungs it can cause  cough and chest pain, as well as difficulty breathing.”

Little Ace kept fighting through a procedure to drain the fluid from his lungs. It worked and he was breathing easier.

Doing great and close to specialized care

“Allie and I experienced so many emotions during this time,” T.J. recalled. “What would the future hold and would there be more surgeries; will Ace be limited in his activity or be able to run and play with his older brother. Everything was overwhelming, but we were so grateful for the staff who took care of Ace and who truly took care of us too.

Norton Children’s Heart Institute

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“Dr. Kozik explained everything during the process. Ace will need to continue to have follow-ups for the long-term. Dr. Kozik explained that he shouldn’t need any more surgery on his aorta.”

Ace eventually may need surgery to address a bicuspid aortic valve — two leaflets making up the valve instead of the normal three.

With his second birthday approaching, Ace is very happy and most important, a healthy toddler. His parents say that he is the biggest child in his day care class. He loves to play and is learning so much. Ace is above average on both height and weight for his age.

“We are very thankful to be living in the Louisville area so that Ace will continue to get the care he needs,” said T.J. “Having the medical expertise close to home where our family can be here to support us is very important to us.”