Lia's Story (Congenital Heart Disease - Tetralogy of Fallot)

Posted on 09/08/2014

Adopt Special Needs: Family StoriesBoth my husband and I work in the medical field, have traveled extensively, and had long wanted to adopt internationally and provide a home for a child who needed one. In 2011 we decided that the China Special needs program was a good fit for our family, and we were able to bring home Lia from China in 2012 at the age of 3 1/2.  She had been diagnosed with Tetralogy of Fallot when she was an infant. This typically involves four defects of the heart: 1) a large ventricular septal defect, 2) narrowing of the pulmonary valve, 3) enlargement of the right ventricle, and 4) an overriding aorta. It is the primary cause of "blue baby" syndrome, and, like all heart conditions, there is a wide range of severity within this single diagnosis. In some cases it is associated with a genetic syndrome.

In Lia's case, surgery to repair her heart was done in China (thanks to funding provided by LWB) when she was 10 months old; so she came to us as an active, pink, and healthy child. Her cardiologist here in the States feels that the repair done in China was very successful and right now we only have cardiology visits once a year where she undergoes non-invasive heart echoes and EKGs. She does not take any medications or have any restrictions. As she grows they will carefully monitor the area around her pulmonary valve to watch for leakage and any subsequent excess strain on the right ventricle.

Most TOF patients will need a valve repair/replacement at some point in their lives, but much to the frustration of this OCD, over-planner of a mama, there is no way to predict at what age this will need to happen for Lia. Thankfully each year there are amazing advancements in cardiology, and we are hoping that she will benefit from these in the future and live a long and healthy life, as most TOF patients now do. We love her imagination, sense of humor, and incredible spirit and can't imagine our lives without her!

Adopt Special Needs: Family Stories