CHD Impacting Our Lives

bedsideThere is no question having a heart baby is a life changing experience.  It is filled with hardships, incredible joy, sadness, miracles, great challenges and so much more. Everyone in the family is affected from the CHD baby themselves to the parents, grandparents, and so many more. 

Everyone’s situation is unique.  I truly feel for every heart family I meet or story I hear.  My view has always been there is a reason for my heart son coming into our lives.  I may never fully understand exactly why, but he has changed me profoundly.  When I look at him I realize how lucky I am to have these moments to share with him.  When I am at his hospital bedside I don’t complain about being there. I am grateful to have him next to me.  I now understand how precious life is and I cherish every moment with all my family that much more.  This is how my heart son has changed me.

In getting to know other heart families I have seen incredible courage and strength.  I have also heard of sadness and resentment.  Please, understand you are not alone.  There is a very strong heart community to support you.  Lean on us.  We want to get you through those tough times.  As many positives as I have received on this journey so far, everyone can have those moments of doubt, fear or even anger. Never let that be your focus.  This heart child is part of your life for a reason.  Embrace and enjoy every moment you have together.

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.