Support Connor's Heart Journey to Recovery

We wanted to share Connors heart journey for those of you who have been or want to follow

When we were 20 weeks pregnant we learned that Connor had a special heart and was diagnosed with a double inlet left ventricle heart defect. Based off of the diagnosis we learned that Connor would at least have to have two surgeries with a possibility of more. Unfortunately, at three weeks of age he developed pulmonary valve stenosis (narrowing leading to reduction of blood flow of the lungs) and he wasn’t getting enough oxygenated blood flow to his body so they did a catheterization in attempt to put a stent into the valve to widen the narrowed area to increase the amount of blood flow but they never got to the area due to Connor going into full heart block (which he came out of the following day). Since they were unable to place the stent successfully due to the heart block, an unplanned open heart surgery had to occur. They needed to place a BT shunt onto his heart to increase his pulmonary blood flow since his body was not producing enough. Within 24 hours of the shunt being attached to Connor’s heart it clotted which could have been fatal, but fortunately he had a second source (his original source) of pulmonary blood flow and this allowed the doctors time to catheterize him to remove the clot, by placing a stent and widening the shunt. The removal of the clot was successful, but some of it did go to his brain causing him to suffer from a minor stroke but neurology said with time this should heal and they were not concerned as he has been acting appropriate for his age. Once he healed from everything we were discharged and went home for a couple of months.

Fast forward to September 9th, we were admitted to the hospital again but this time it was for fighting feeds (which was concerning to us due to that being his only source of nutrition and hydration). Within the first day of arriving at the hospital, Connor ended up with a severe respiratory infection, on top of having Covid six weeks prior. This viral infection caused us to be put on isolation protocol for two weeks. During that time Connor’s oxygen levels continued to drop and then we learned through one of his many echocardiogram’s that his pulmonary veins had become obstructed (which was forcing us to do another open heart surgery to repair them). The CVICU team wanted to repair his obstructed veins sooner than later because if the obstruction where to stay longer and continue to worsen, the veins could permanently become damaged. We knew he would eventually have to have the second phase of surgery called, the Glenn procedure, but we thought it wouldn’t have been until he was around six months old. Since we were in the hospital with his obstructed veins, they decided to move up the Glenn procedure to just go ahead and fix everything all at once to avoid continuous open heart intervention. Due to the viral infections, his lungs were very sick and his heart pressures were higher than normal which can impact the success of the Glenn procedure. Normally, they like to wait to operate post virus for at least 6-8 weeks, but unfortunately we didn’t have a choice to wait as his obstruction had worsened. The surgery of the Glenn procedure and the reconstruction of his pulmonary veins was a success, but post surgery, we ran into a different issue. His saturation numbers we not where they should have been postop which made the which brought a lot of concern to our medical team. After many tests, they found that Connor had a vertical vein that looped over his pulmonary artery and had clamped down causing a new obstruction which actually caused one of his lungs to collapse so he was working off of one long to do all the work). They immediately took him to preform a catheterization to attempt putting in stent so removed the new obstruction , but upon placing the stent it caused the recently repaired pulmonary veins to be pull up causing narrowing of the veins and decreased flow resulting in having to go back into open heart surgery for a third time to remove the vertical vein and to revise the reconstructed pulmonary veins.

Connor was intubated for 11 days and was finally extubated October 3rd. He is currently stable,the road to recovery. The doctors are anticipating he may remain in the hospital for a few more weeks. Once he recovers, we look forward to going home and letting Connor grow and do normal baby things until his body tells us he is ready for the last stage, which is the Fontan surgery.

Thank you for all the love and support so far.

Chris & Nicole