Every Heart Has a Story

Thanks to Stef for organizing this Heart event.  I'm a day late posting, but at least we made it!  Check out Stef's web page for MANY other amazing heart stories.

Our story began at 20 weeks into our pregnancy.  The ever-exciting 20 week appointment came, and we were soooo ready to learn the sex of our first child.  It was at that appointment that we learned our son's heart wasn't built just right.  An appointment with a specialist the next day confirmed we had Tricuspid Atresia, Pulmonary Stenosis, ASD, and VSD (combined would be called Hypoplastic Right Heart Syndrome).  The specialist, who had no bedside manner, told us we should consider terminating the pregnancy, since our baby would likely not live long.  We told him we didn't care how long he lived, he was OUR SON.

The decision was made to do everything we could to prepare for our special delivery. Many many specialist appointments led us to believe we would deliver in our hometown, be transferred immediately to Atlanta where our son would undergo his first open heart surgery at just a few days old.  We knew he would need this surgery and at least two more to survive.  Sam shocked us all by not only coming early, but being extremely healthy and stable.  We beat the odds and didn't need this first surgery.  We got to bring Sam home just in time for Christmas!

Over the next few months, Sam got more and more blue.  We scheduled his Glenn surgery for April.  Sam, once again, had other plans.  Through a set of circumstances I can only describe as miraculous, Sam wound up crashing at our local hospital.  His sats were in the 30s, his blood pressure was unreadable, and his heart rate was at human max (220).  I call this a miracle because at any moment, this could have happened at home or daycare, and it was a fluke we were in the hospital in the first place.  The cardiologist on call worked over the phone with doctors in Atlanta to get Sam stable and transferred quickly up to the CICU in Atlanta.  I will never forget watching Sam fight for his life...watching his vital signs wax and wane...seeing the look on our cardiologists face when he told us he was truly unsure if Sam would make it through the night.  But the hand of God was everywhere that night, and Sam survived to get to Atlanta and have his Glenn surgery early.  He had a nearly uneventful recovery in Atlanta, and within a month was back to normal!

We have had an amazing life since then!  Sam is 20 months old and the center of our world.  He will still need the Fontan surgery, and, someday, a transplant.  But currently, Sam is stable, and our cardiologist does not see any need for surgery for YEARS to come! 

This post could have been PAGES longer.  The details that surround our brief life in the congenital heart defect community fill my brain to the max.  As difficult as it has been at times, and as difficult as it is sometimes to see a bright future, there isn't much we would change for ourselves.  We have truly been blessed by our experiences since Sam entered our lives, and that includes the lessons we have learned about life and love because of this heart defect. 

If anyone is in need of support or assistance in their own CHD journey, please feel free to contact us.  We love sharing our story and would love to be a light in the dark for those who need us.

~ Kathy