We met yesterday with Dr. Constantine Mavroudis, chief of pediatric cardiovascular and thoracic surgery at Children’s Memorial Hospital. We really enjoyed meeting him, though of course we wish we had no need to know him. Anyway, he confirmed the procedure that our cardiologist explained to us. The good news is that so far, Sprout does not seem to have any of the factors that further confound the repair of a Truncus Arteriosus. We’re lucky to have one valve that is insignificantly leaky and a short pulmonary trunk.
Here’s the timeline he explained to us: Once Sprout is born, the baby will be transferred from Prentice Women’s Hospital at Northwestern Memorial (where I’ll deliver), up the road to Children’s. The cardiovascular surgery team will organize and arrange for the transport, including sending a team to come get the baby. Sometime within 7-10 days of birth the surgery will occur. Dr. Mavroudis will operate with his associate Dr. Backer. Sprout will be on the heart/lung machine while they do the following: remove the pulmonary artery from the trunk, use a pulmonary homograft (from a human) to create a proper pulmonary trunk, close the ventricular septal defect (VSD) and put it all back together. Once in the pediatric ICU (PICU), Sprout will be kept asleep for 2-3 days while the pulmonary pressure decreases. Then baby will be weaned off the ventilator. Once off the ventilator, baby will leave PICU for a regular room. Total hospital stay should be 3-5 weeks.
We learned, with a sigh of some relief, that the mortality rate (based on 30 day survival of surgery) depends on the risk factor. Our risk factors put us at a 2-5% mortality risk. It’s lower than we thought.
During the surgery registered nurse practitioners will keep us informed of the progress and the doctors will talk to us afterwards. The nurse practitioners will also work with me to pump and freeze my breast milk so that Sprout can have it when s/he is ready. If it’s possible, we’ll try to feed the baby prior to the surgery, but it’s likely that the baby will be on an NG tube for feeding until after the surgery.
The conduit will probably need to be replaced for the first time between 8 months and 3 years. Follow up surgeries are dependent on the conduit (pulmonary trunk replacement) failure/lifetime.
The one new piece of information that we’re trying not to freak out about—Dr. Mavroudis told us that 10-12% of Truncus babies need heart transplants in their 20s or 30s. Of course, this is based on kids who had the repair done +20 years ago, so we’re hopeful that this procedure, and the future ones, will continue to improve. He mentioned some research going on in which they’re trying to use a child’s own cells to grow the replacement artery. If this is successful, it could mean that eventually the replacement conduit would grow with the child and no longer need to be replaced.
BTW, Dr. Mavroudis went to Jersey City HS, Rutgers and University of VA medical school. He did his pediatric and surgical training at University of California (Berkeley, I think). His credentials are excellent and he’s from NJ! He also told us that the 3 best places for this surgery are Ann Arbor, Chicago and San Francisco. So, we’re as confident as we can be that we’re in the best possible place for what we need.