Caleb's Heart

Calebs story...
At 22 weeks pregnant, Caleb was diagnosed with Tetralogy of Fallot (TOF) a rare Congenital Heart Defect (CHD) caused by a combination of four defects that are present at birth.
These defects, which affect the structure of the heart, cause oxygen-poor blood to flow out of the heart to the rest of the body.
Basically his blood doesn't have enough oxygen due to a narrow thickened aortic valve and an obstruction between the lower chambers of his heart (a hole in his heart). In the better cases these babies are able to grow for a few months and then be brought in for open heart surgery between 3-6 months old. We believed Caleb was one of these better cases but still took the precautions and delivered him at CHOP's special delivery unit.
A wise decision. Caleb was taken immediately after birth to the Cardiac Intensive Care Unit and monitored closely. It was discovered after one day his oxygen levels were dropping and the plan to take him home and grow and get stronger before surgery quickly changed.  Caleb had his first open heart surgery at 7 days old. We were able to leave CHOP and start our lives at home but continued to stay close in the city as Caleb is also being monitored for genetic issues and watching his development. He has to have regular treatments and tests to monitor the function of his heart as we know it will never be fixed.

Right now his pulmonary valve is leaking and pooling blood. Every time his heart beats a tiny bit of blood gets trapped in the right bottom chamber of his heart.... Overtime this muscle will thicken and will be unable to pump the blood out properly causing heart failure.

When Caleb was born, the first 3 months his insurance was not accepted by CHOP. He was not only born there, but stayed in CICU CCU and had his open heart surgery. We wrote letters to the state and they generously gave us a grant towards the cost of the first 3 months, but we still struggle to pay off the medical bills and lost wages. CHOP is our second home.

Anything helps.

Awareness helps!

Share our story! Ask questions! If you know someone expecting tell them to ask questions at that 20 week anatomy scan! Until my childs diagnosis I knew nothing about CHD or TOF and it was the scariest thing I have ever and will continue to battle with my child. There are no cures, band-aids and temporary patches BUT
AWARENESS = FUNDING = RESEARCH = SAVES LIVES!!!

We still have a lifetime of battles ahead and we are ready to face this road, together we are #heartstrong

Thank you for reading Caleb's story. Please continue to keep him in your thoughts and prayers. God Bless!