So here we are July 26, 2017, meeting our new Pediatric Cardiologist for the first time. Today, is the day. Do find out, yes we for sure have Hypo-plastic Left Heart Syndrome, or do we find out that everything is ok.
The office of Dr. Stock, in Tempe Arizona is AMAZING!!!! The staff is nice, helpful and understanding. The doctor, is AMAZING! He was great at making my husband and myself feel relaxed, well as relaxed that we can possible be. So, now it is time for the news…..
YES, that baby has Hypo-plastic Left Heart Syndrome.
Ok, here we go…. The process of correcting or reconstructing the heart happens in three surgeries, 1) the Norwood, happens within one week after birth, 2) the Glenn, happens approximately 4-6 months after birth and finally, the Fontan, which happens at about 3-4 years of age. Worst case, if these surgeries do not work, heart transplant.
Now, the decision, where to have these surgeries. The top three hospitals for these procedures, based on volume, research, survival and staff are the Children’s Hospital of Philadelphia (CHOP), Children’s Hospital of Boston and Stanford (California).
Decision made… we are going to the best CHOP!
Now, is the time for planning travel, housing, costs, leaving my son in Arizona. So, much is going on…. Lucky for me I do have my parents here in Arizona to help with the care of my son and to try to maintain some normalcy with his school, and sports. I am also lucky in that I am able to plan this and pick the best place for my family and unborn son to have this surgery completed. There are so many families out there, that do not get this and are surprised with the shocking disorder right after birth.
There is a lot to be positive about, and honestly, positivity is the ONLY way to handle situations like these. You can either let the FEAR and depression take over or you can take charge and handle what God gives you. I honestly believe that God, will never Give you More than You can Handle!!!!
Our next appointment is on August 24, and that is when we will inform Dr. Stock that we made a final decision CHOP is where we want to be.