Diagnosis and Hope

heart drawing

This is the diagram of our baby’s CHDs as drawn by his cardiologist.

Our first appointment at CHOP (Children’s Hospital of Philadelphia) was a positive experience.  We already knew something was wrong with our baby’s heart, what we needed was a real diagnosis.  After a lengthy echocardiogram we were escorted to a room where we were told we would be meeting with the doctor and nurse.  A few minutes later the nurse came in told us we would be meeting with her, the doctor, a fellow and a social worker because they meet as a team.  We felt overwhelmed at this point thinking our son was in serious trouble if all of these people were going to meet with us.   They all came in and sat with us and began to lay out our son’s heart defects and the plan to help him survive.

He had a large Ventricle Septal Defect, a Straddling Tricuspid Valve, Right Ventricular Aorta and Pulmonary Artesia.  If not addressed these defects would be fatal.  It was difficult to hear this news but now we had answers.  And better yet the doctors had a plan to help him. 

Thirty years ago we would have been sent home with compassionate care and he would have died a few days after birth.  Fifteen years ago he would have had a 50/50 shot of surviving surgery.  At present because of advances in technology and a greater understanding of treatments his odds of survival were better than 98%. 

As a father I am incredibly grateful that there was hope.  It is easy to fall into the trap of depression when your child is sick and faces life threatening challenges.  As I see it we are fortunate there are surgeries and treatments available to help him.  I know he will likely face challenges, people who have had these surgeries typically have two thirds the energy of people with a normally functioning heart.  He may have developmental delays, he may have issues with other organs down the line.  But I will continue to see the positive side and my family and I will do everything we can to help him live as normal life as possible.  I will always see him as exceptional.  He is my miracle baby.  He has changed my life for the better.  I am no longer just a dad, I am a heart dad and advocate for him and other children who have CHD.

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