On August 2, 2019, my husband and I welcomed our little baby boy - Frankie III.  On August 4th, we found out he had a rare form of Congenital Heart Disease - Tetralogy of Fallot, which had gone undetected throughout our pregnancy.  His TOF included a large Ventricular Septal Defect (VSD - a hole in his heart).  VSD's alone are not uncommon and if small enough, close on their own.  That was not the case for us.  

Flash forward to November 8, 2019.  At just 14 weeks old, our baby had open heart surgery under the expertise of Dr. Najm at the Cleveland Clinic.  Due to complications with a viral illness he had, his post-op stay was delayed a bit but he's definitely a fighter.  He was discharged home one week later. 

He's never had failure to thrive (being underweight), which is the most common symptom of CHD.  He's never had "tet/blue spells," likely because the TOF and VSD counteracted one another, according to his first Cardiologist, Dr. Jou at Fairview Hospital.  We have been fortunate enough that symptoms have never been an issue, but saying he's kept our family on our toes feels almost like an understatement.  We really have no sense of what's "normal" for a newborn baby. 

Currently at 3.5-years-old, Frankie continues to follow Cardiology annually with Echos and EKG's (the last two having to be sedated since he won't cooperate in office).  We've repeatedly been told to treat him like a normal baby (which is so hard because he's such an amazing little man!).  Recently, he was diagnosed with Moderate Autism (ASD Level 2), so that's another hurdle we're working to overcome.  He has a fantastic support system through Bay Schools and our family and friends, which has enabled him to continue to flourish and grow at his own Frankie-paced-rate.  Among his favorite things are the alphabet and numbers, and while his speech has been delayed it seems like he learns a new word every day!  

I've personally participated in the Heart Walk since 2014; these past few years has meant a little something more.  I've experienced first-hand the importance of organizations like the American Heart Association.  Because of research they and other organizations perform, my baby boy is able to live a healthy life and have a promising life expectancy.  Kind donations made by friends and family make this possible and I cannot properly express how grateful I am that medicine has been able to advance this far because of them. 

We attended our first in-person Heart Walk last year (2022) and plan to do so again this year.  Please join us!