The process leading up to the fetal intervention consists of several meetings, doctors, nurses, tests, scans, conversations, and consents. We are fortunate to have a couple of days to experience this. Most families come in to town, have a full day of evaluations, and the procedure the following day. We have fortunately had some time to process, pray, rest, and reflect.
Yesterday we met with a world-renowned Radiologist, Dr. Benson. Her job on the team is to hold the scope that guides the procedure. It is all led by ultrasound technology. She affirmed that Kaden is an ideal candidate, and she was confident not only in the procedure, but also her team. She has been on 97 out of the 100 procedures that have been completed for this particular condition, including the very first one about fifteen years ago.
The ultrasound report also confirmed what we already knew; all other areas of his body are growing and developing normally, with the exception of the left side of his heart. His specific conditions are known as critical aortic stenosis and borderline left heart syndrome, and these are causing a number of other problems. The procedure, when successful, will stretch the aortic valve to release some of the pressure, allow blood to flow through the aorta and rest of the heart as it was designed, provide the next couple of months for his heart to heal from some of the damage, and allow it to continue to develop. We are praying for a successful procedure, the opportunity to carry him to full term, and for Kaden’s heart to heal.
Next, we met with the cardiologists, including Dr. Tworetzky. They completed another fetal echocardiogram and reviewed all of our previous records. The 18-week ultrasound was unremarkable; there was nothing missed. His condition (critical aortic stenosis) is fast-progressing and we are grateful to have found this when we did. Ultimately, the purpose of the procedure is to prevent Hypoplastic Left Heart Syndrome (HLHS). For most children, this is a condition that requires multiple surgeries and a limited life span. Based on the last week’s chain of events, we are confident in how we were led here and moving forward with the procedure. There are absolute risks in doing the fetal intervention, yet we feel the risks of doing nothing at all are much greater. We understand there is some controversy per Dr. Google; however we have chose to listen to our Maker, and then the pros.
During the procedure, Dr. Wayne Tworetzky is the coach. He leads the team. He calls the plays. This link is a You Tube video that provides a glimpse into what he does here at Boston Children’s Hospital: http://youtu.be/lo-tp73fDrQ.
As we reflect on the day’s events, we can’t help but examine our own hearts. As humans, what we truly think and how we truly feel, is no doubt expressed in our actions….. and reflected in the way the others treat us. We know that it is very easy to say how we are, but how are we really when nobody else is looking? Or maybe a better question is, who are we when nobody else is looking?
Our family is far from perfect, yet ask any one of our children what is the Big 3? And they will tell you…. Be like Jesus; Have a Kind Heart; Make the Right Choice. We strive to remind our children (and ourselves) to keep their little hearts aligned with that motto.
Several more meetings today, and Nate’s father flys in to Boston tonight. Please pray for a safe arrival. More later….
Nate & Erica