Brody's Story

A mother shares the story of her son's heart transplant - a story of hope!

My son, Brody Tucker was born prematurely at 34 weeks in April 2007. At one week of age, he was shipped to a hospital for bradycardia. During this hospitalization, we found that he had a heart condition called hypertrophic cardiomyopathy. He stayed in the NICU for three and a half weeks mainly for feeding issues. One month after discharge, he was re-admitted to Children's Mercy Hospital for heart failure. Brody also suffered from pericardial effusions, which created more pressure on his enlarged heart. At 2 months of age, Brody's heart was almost three times the size of a normal infant's heart. There was very little that could be done. He was given minute doses of lasix to help effusions. He was also on a beta-blocker and carnitine to try to improve his heart function. It was then when we were told our son would die without a heart transplant.     

After being life-flighted to St. Louis Children's Hospital, Brody was immediately worked up for transplant candidacy. He had a cardiac catherization and underwent a 'pericardial window' surgery to drain his pericardial effusion. This allowed his pericardial effusions to drain into his stomach lining. He remained on lasix and was put on milrinone and calcium gluconate to improve heart function. Brody also had oxygen supplementation until he was intubated. He received continuous nasogastric feedings due to his heart failure. During this time, Brody had several labs drawn, chest x-rays taken, heart catherizations to evaluate heart pressures and function and almost daily echocardiograms/EKGs to monitor his deterioration.

Finally, Brody's second chance of life occurred on August 1, 2007 when he received his heart transplant at age 3.5 months. Even though his new heart is technically big for an infant his size, it is still half the size of his hypertrophic heart. Brody will take life long immunosuppressant’s to prevent rejection.

During this candidacy evaluation period, many genetic tests were completed. Brody had a skin biopsy and several blood tests to rule out certain genetic disorders such as glycogen storage diseases and Noonan's syndrome. At this point in time, our family had no previous history of HCM. The biggest challenge for collecting data for our family history was the fact that my husband does not know his biological father. The only cardiac disease noted in our family was due to lack of exercise and poor diet habits.

It is very important for families to know their history. Although we had no family history of HCM, we continued to search for answers. Brody is currently being diagnosed with a mitochondrial disorder (which can present similarly to HCM in some cases), which commonly affects the heart. This revelation is very important because it prompts the rest of our family to undergo genetic testing and get proper treatment. If there is a history of cardiac disease, it is so important for families to look out for signs and symptoms of that disease. It prompts them to take preventative steps and early interventions to help maintain the disease. These mere actions can help save lives.