Before beginning to tell the story of Leo going from ECMO to VAD, let’s rewind 5 days to March 28th. We had been discharged after his second admission to CHCO for fluid overload and trouble breathing just 2.5 weeks prior and this was our first outpatient cardiology appointment. The day before was spent in the Emergency Department after Leo’s oxygen tank ran out for just a couple of minutes and he turned completely gray and struggled to breathe. His oxygen cannula frequently escaped his nose at night and it took several minutes for the pulse ox to beep and wake me up when he hit 89% saturation, so immediate desaturation was a warning that something was very wrong. However, a chest x-ray showed nothing out of the ordinary compared to his previous one (definitely fluid on his lungs but nothing alarming for a baby with CHD). Leo appeared stable and recovered from the event. We were sent home late that evening and told to keep our cardiology appointment, which was first thing the next morning.

By some miracle, Leo made it through the night. He slept well, his oxygen saturations stayed up on his usual 0.5L flow and he did well on the drive to Laramie at 7,600 feet, where the cardiologist happened to have his clinic that day. We hoped it was just a fluke. The echo would look fine, Leo would spend another few months growing and he could get a new mitral valve.

“Things don’t look good on the echo,” the cardiologist said as he entered the room. Leo’s right heart was struggling immensely against his increasingly high pulmonary artery pressure without a clear answer. Suddenly gray and listless compared to just an hour prior, he was helicoptered for the second time to CHCO. The echo when he arrived looked even worse and culprit was an increasing gradient across the mitral valve, meaning blood flow was turbulent due to the valve being too narrow. Translation: not enough blood could get through to the left ventricle to support Leo’s body and as a consequence, it backs up and caused severe pulmonary hypertension. As it turned out, the “decent” chest x-ray in the ED was actually very bad: his pulmonary artery was getting so damaged, it had clamped down to protect itself from anymore fluid flooding the lungs, giving the illusion of a good chest x-ray.

Later that night, I asked the CICU attending if they could give him diuretics or if anything could be done with medicine to manage this. The amount of diuretics he would need would ruin his kidneys. Giving medicine to relax the pulmonary artery would cause increased blood flow in his lungs, which would in turn flood his lungs with even more fluid because of his stenotic mitral valve. “We’re between a rock and a hard place in trying to treat this,” she said. These are words you never want to hear about your child’s condition.

Ever thankful for tender mercies, the next morning happened to be surgical conference day so we did not have to wait long to hear the team’s plan. Leo’s primary cardiologist at the time (he has a different one now that he is managed by the transplant team) came in and told me that nothing more could be done for his heart. The problem, she explained, was that the ring around Leo’s valve called the annulus was not growing. A valve replacement would do no good because it would be like trying to put in a new door when the door frame is too small. Leo’s only chance at survival would be life support and ultimately a heart transplant.

This news came on Friday morning. The surgeon had arranged to place him on a Ventricular Assist Device (VAD) the following Tuesday morning. This would take over the work for his left heart until his transplant, assuming he met the criteria to be listed. Over the next several hours, I met the attending doctor and transplant coordinator from the heart failure/heart transplant team as they ordered blood tests, assessed Leo, and went over the basics of what it means to have a heart transplant. Leo was holding steady on high flow oxygen but inside his heart was a ticking time bomb.  
 

Note: Surgery #3 was Leo’s G-tube placement prior to his first hospital discharge.

Please follow along on our COTA for Team Leo Facebook page to see when Part 2 of this blog is written!