Heart Hero Christian

June 2021 HEART HERO OF THE MONTH
Story by Heart Mom Rebecca

My pregnancy with Christian was normal, easy, and healthy. Ultrasounds looked good and no signs of any issues.  Christian was born full term on November 18, 2018, and was a healthy baby! He eventually had difficulty gaining weight. His pediatrician had concerns regarding this, so we had weight checks and met with a nutritionist to assist with weight gain. We took many approaches, with some success. On September 5^th, 2019 at Christian’s 9-month checkup our pediatrician heard a heart murmur. Out of precaution, she asked us to get an echo and chest x-ray done at Children’s hospital to rule out anything serious. Up until this point, my husband and I had been insistent Christian was just small as we are not big people. Therefore, we didn’t know how blindsided we were about to be.

After all of the tests, our cardiologist Dr. Christiansen came into the exam room to deliver the results. We were devastated to find out that Christian had been diagnosed with an Atrioventricular Septal Defect (AVSD).  He had a large hole in his heart, which was allowing blood to flow between the chambers and only one valve had formed instead of two. This was allowing blood to pump through Christian’s lungs as well. He would need open heart surgery as soon as possible to repair this. Surgery was scheduled a week later and we had multiple appointments leading up to it so we could learn about the surgery. It was overwhelming but surgeons Dr. Hammel and Dr. Ali were wonderful in explaining the surgery.

September 12^th, surgery day. We felt like zombies, just going through the motions, not knowing what to expect. Handing Christian off to the nurses was emotional, we were full of tears knowing what he was about to go through. Surgeons were able to patch his heart and create the valves without any complications. Christian did so well, he was taken to PICU without a breathing tube or sedation! I actually felt relief, so thankful the surgery was over and he was on the road to recovery. The next day, Christian was already showing his personality and blowing raspberries. It was a wonderful sign, truly a miracle.

After a few days in PICU, tests showed there was leakage in the left valve. On September 16^th, Dr. Hammel operated again and added extra reinforcements. Christian began recovering quickly again, within days back to his normal self, playing and giggling. Three days after we moved to another floor, one step closer to home. On September 20^th, after we had sent our families home as the plan was to go home the next day, we received a phone call telling us there was leakage in the left valve again. This news left us devastated that Christian has to go through surgery again, we were so close to going home. The 3^rd surgery definitely took a toll on him, his heart rate was higher, very uncomfortable, screaming and crying. He slept almost the entire next day. Daily echoes showed the valve looking better than it did after the first two surgeries. We were then able to go home after 3 surgeries and a very long 13 days!

During our stay at Children’s we received so many visitors and gifts, the support and generosity were absolutely amazing. We were brought to tears many times. Our families spent a lot of time with us. This gave us some breaks and allowed us to meet with doctors as needed. Today, Christian is thriving! He doesn’t stop moving and loves playing outside. One would not know what he went through. Echo’s have shown improvement every time and we feel pretty lucky with how well he has recovered. Assuming things continue to look good, Christian shouldn’t need any more surgeries.

We have also been blessed by the generosity of Heart Heroes. Christian received his Response and Recovery kit, which included an iPad, Heart Hero’s case, and a Heart Hero’s blanket.