Walter is well into 11 months old and officially has his second open heart surgery under his belt. It remains an understatement to say that this little boy absolutely astounds me with his seemingly endless perseverance and energy. He is such an incredibly bright light in our lives.
Not unlike last time, our expectations going into surgery were vastly different than the end result – except this time, the result is (at least for now) for the better.
I have heard surgeons describe Congenital Heart Defects (CHDs) as “snowflakes” – meaning that every variation in each patient is the least bit its own and unexpected. In Wally’s case of Tetralogy of Fallot, this shows itself in additional anomalies and defects outside of the “Big 4” of a tet:
- Small and thickened (stenotic) pulmonary valve and artery
- Hypertrophy of the right ventricle (from increased pressure and over-work of the muscle)
- Overriding Aorta (anatomical anomaly which will never be corrected)
- Large Ventricular Septal Defect (hole between the lower chambers of the heart)
In addition to these, Walter has very small Patent Ductus Arteriosus (an artery that should be closed), an Atrial Septal Defect (hole between the upper chambers of the heart), and multiple Left Anterior Descending Coronary Arteries crossing over, and exiting from the Pulmonary Artery.This little heart is going in A LOT of different directions.
The plan going into surgery was to essentially “jump” Walter’s pulmonary artery with a conduit in order to avoid his coronaries, and replace his pulmonary valve. (As well as correct the rest of his defects). Instead, what Dr. Starnes was able to do was very carefully, skillfully, and precisely place a Transannular Patch (like a “roof”) on Wally’s Pulmonary Artery in order to make it larger. Once the surgical team had essentially shaved away the very thickened part of Walter’s right ventricle and pulmonary valve, the doming and restriction to his valve subsided and in Dr. Starnes words, “opened up beautifully”.
Prior to surgery the area under Walter’s valve had grown so thickened and stenotic, the was almost no blood passing through his valve (total restriction). This is why Walter has his shunt placed in November.
At this point, Walter has been able to keep his own Pulmonary Valve (PV), which is always the best option if functional. We are *hoping* that his valve, though small (somewhere between 55% and 65%) of a normal PV, will be well tolerated by his heart and never have to be replaced. The repair was a success with only mild valve regurgitation (expected) and a tiny leak in the repair of his VSD (well-tolerated).
With ever advancing technology and Walter’s great outlook, we are hoping he will be spared future open heart surgeries and that any adjustments he may need can be done in the cath lab from this point on. But in all reality, we are just making a goal of no heart surgery for 2016. That sounds pretty good, right? With two already in the past nine months, that seems like an attainable wish for now.
There are no guarantees in life and Walter still has many unknowns ahead. He will always have a CHD, and always have to be closely monitored. Still, this mama can breath a little deeper and sleep a little easier knowing that we have made it to this point. You’re our miracle.
Happy 11 months, sweet boy.