Meeting with Cardiologists

Ted and I met with several cardiologists this morning. We went over the anatomy of the heart and discussed the various issues seen on the echocardiogram from Verity’s first day of life. 

They explained several conditions involving various connections between the arteries and veins immediately outside the heart (one of which is a PDA, patent ductus artenosus, say that five times fast!), all or most of which should resolve.  If by chance they don’t resolve on their own, these minor defects, while not life-threatening, could certainly be fixed if we choose to intervene with surgery on the more concerning issue (in other words, if they are doing surgery anyway, why not go ahead and fix the minor issues as well?). 

The biggest problem with Verity’s heart are the three VSDs: ventricle septal defects. Two are small and are toward the bottom (“meaty”) part of the heart and are not a major cause for concern; VSDs of this nature often resolve on their own, and if they don’t, the size and location are not prohibitive.  The most concerning VSD is considered “large” and will begin to affect the relative pressures between the right and left sides, which are important to the overall flow of blood to the body and lungs. If the pressure is higher in the body, oxygenated blood spills over and gets sent to the lungs, and less saturated blood is all that’s available to the rest of the body. Right now, the blood vessels in her lungs are constricted (as is normal for a newborn recently out of the womb), which keeps the pressure on that side higher, which allows the damaged heart to more closely mimic a normal/healthy heart.  This is a good thing—it means correcting the problem can wait until she’s bigger and can better withstand surgery. We also talked about the fact that the valves to Verity’s heart are thicker than normal, which is not causing any problems now, but bears monitoring as there is a possibility that the thickened valves could become stiffer over time, which would make her heart work harder to get blood in and out.

Three options were presented to us:

1. We could do nothing, possibly monitoring her but allowing her body to function as best as it can on its own, knowing that some of the problems might heal on their own over time (although they might not). As Verity’s heart grows, the smaller holes are certainly more likely to close up on their own than the larger VSD; however, we could choose to avoid the risks associated with surgery altogether in favor of minimally intervening and creating as high quality life as possible without undergoing major surgery.

2. A less invasive treatment option, meaning an option that would not require them to stop her heart and go inside, would involve putting a band around one of the pulmonary blood vessels immediately outside the heart.  This has the effect of artificially raising the blood pressure in the lungs, which keeps her functionality where it is right now with her lungs still operating at higher pressure.  The constriction band would not grow with her, however, and it would need to be replaced in a matter of months.

3. Finally, full surgical repair, which involves stopping her heart and putting her on a heart/lung machine for the duration of the procedure.  This option would allow the surgeons to go in and fully repair the defect(s) in the inner wall of her heart.  The surgery is more risky and more intrusive but offers the possibility of being “one and done” if the repair is successful. 

Before we go further, I will note that, based on the information we received today, we feel the right thing to do is whatever we would choose for a child without Trisomy 18, and that is the full surgical repair. Why bother with option two, which really is only a temporary fix? Verity shows good health overall—we feel she deserves the opportunity to buy more than just a couple months’ worth of time. And we would rather give her the chance to have an extended life span rather than deny her the opportunity simply because of her T18 diagnosis; the risks of surgery, therefore, are rather to be taken than making a decision (i.e. doing nothing) that will almost certainly shorten her life. God will direct the outcome of the surgery, and we trust His sovereign plan.

With that said, it was of interest that Verity’s case will be discussed Monday at the weekly gathering of the full team of cardiologists from this area. This is a time when all the experts evaluate a given situation, discuss all kinds of angles and viewpoints, and collectively come up with a “recommendation.” We of course are not obligated to follow that recommendation; however, with so many minds mulling over all the facts, there may well be other considerations that we have not heard about with only a few people looking at the data. To give the fullest picture, a follow-up echocardiogram was performed this afternoon (which I got to watch—fascinating technology!). This will clearly show whether those minor flaws seen at birth have begun to resolve yet or not and will give a full and current picture of her heart for the doctors.

Meanwhile, we have a list of things to watch for as Verity grows, and the goal is to get her as big and healthy as possible before doing the surgery. If her growth slows, for example, we will need to get surgery scheduled sooner rather than later. The biggest question for us is whether we should do it before we make our big move to Colorado this summer (thank you, Air Force, for sending us closer to family!) or whether we will wait and do it after we get settled there. The change in elevation may be a consideration, but we will be prayerfully waiting for the Lord’s direction and watching Verity herself for indicators as to what will be best for her.