February is Congenital Heart Defect Awareness Month

Maddy, 2005, 2 months post OHS

February is Congenital Heart Defect (CHD) Awareness Month.  Throughout the month of February, the goal is to spread awareness of CHDs, including pre-natal diagnosis and research for improved treatments and surgergies for CHD kids.

My daughter, Maddy, was diagnosed with a CHD at our 20 week ultrasound.  She has Tetralogy of Fallot, a series of four defects of the heart. 

Maddy had an exploratory surgery in the cath lab and a separate open heart surgery at around four months of age.  She has been followed by a cardiologist ever since, and will need a pulmonary valve at some point in the future.  We are currently in the watch, wait and pray phase of treatment- waiting for indications that her heart is struggling necessitating the valve replacement, and praying that this doesn't happen until she is bigger, so that repeated valve replacements are not needed as she grows.

By learning our daughter's diagnosis before her birth, we were able to planfully give birth near higher level NICUs and prepare ourselves by learning as much about her condition as possible before she wa born.  If you are expecting or know someone expecting, please read this article  20 weeks pregnant- things to ask about your baby's heart .

Thanks for reading!