Bobby Bear's Heart Repair

This week we focused on getting ready for Bobby's surgery. Tuesday he had a sedated MRI and echocardiogram. This procedure was necessary because the physiology of his heart isn't ideal for a standard AV Canal repair. The doctors needed more information to decide what to do next.

We had a surgical consult on Friday, where we found out their verdict. It turns out that he's got a very high likelihood of having the standard surgery - about 90%. If for some reason that repair doesn't work they will know while he's still on the operating table and they and will start work on the backup plan.

To understand the surgeries you just need to remember the primary job of the heart - take in blood from the body and send it to the lungs to be oxygenated. Then, take in oxygenated blood from the lungs and send that to the rest of the body.

Right now, Bobby has a big hole that prevents these two functions from being separate. Blood that's been to his lungs sloshes into the wrong ventricle and gets sent back to the lungs instead of out to his body. The whole process is really inefficient so his lungs have to work overtime to keep his oxygen at acceptable levels.

The traditional surgery, the one Bobby likely will have, involves putting a couple of patches on his heart to close the holes. In addition, and this is the tricky part, he also currently has only one valve sending blood from his atria to his 2 ventricles. He needs separate valves. However, the doctors are a little concerned that Bobby doesn't have enough tissue to do the job correctly. If this happens, we have a second option.

This second option doesn't involve a repair of the heart. Instead, the doctors will relieve the heart of one of its two functions. Over the course of two separate surgeries - one as an infant and one when he's three - the upper and lower arteries that feed the heart would be detoured so that they bypass the heart and flow directly into the lungs. The heart then would only have one job - to take blood from the lungs and pump it into the body.

Both surgeries have very positive outcomes. Less is known about the long term viability of the second, simply because the surgery has only been around 20-30 years so they have no data on what happens when folks get older.

In terms of success rates - since 2000, the doctors of our hospital have performed just over 60 traditional AV Canal repairs. Only one child failed to survive, and this child died months later of an unrelated liver failure. The surgeons are very obviously proud of this statistic - one we will be more than happy to add to. Otherwise, the most serious risk of this surgery is that one of the valves will leak and have to be repaired with Bobby is older; more common but less severe problems can occur if Bobby develops an infection as the result of the surgery. These infections slow recovery but don't have long term repercussions.

As I mentioned, less is known about the second kind of surgery but it's success rate is also very high. The survival rate is 94% and Bobby should be able to have a normal activity level after the surgery.

So we're feeling good. Our timeline has been moved from the original 3 month mark to somewhere around 4 months. The side effects of Bobby's heart failure are fairly well under control so, unless that changes, we're going to let him grow for a month longer before surgery.