When I was 22 weeks pregnant, during a follow-up ultrasound, I got the news no expecting parent ever expects to hear: “There is something wrong with your baby’s heart.” The fear and grief of that moment overwhelmed me. I am so thankful his dad and I chose to not let the fear control us; we welcomed our precious son, Kiran Aaron Valji, into this world on October 21st, 2015.
Kiran has Tetralogy of Fallot with Pulmonary Atresia and MAPCAs. This is a complex condition, but he has proven to be a strong and stubborn fighter. His collateral arteries remained stable enough to put off his first open heart surgery until he was 10 ½ months old. At that time, we traveled to Stanford so he could be operated on by the leading expert for his specific heart condition. His unifocalization and complete repair was on September 7, 2016. It was a highly complex 14-hour surgery. To say that was the longest day of our lives is a gross understatement. The surgery was a resounding success, and he completely rocked recovery. Much to our surprise, we were discharged 9 days post-op and flying back home just 11 days after open heart surgery!
Life with Kiran continues to be an adventure. While our medical appointments have slowed down significantly after his surgery, our therapy appointments have taken off. We are dealing with additional medical issues and developmental delays across the board. He is still primarily fed through his g-tube. But, for now, his heart is stable. He is off all medications. He is growing and making slow, steady progress in all areas.
And his smile, as his daddy likes to say, lights up the universe. He is a very social kid who just captures people’s hearts wherever we go. This journey hasn’t been easy – and it’s far from over – but we would take it again and again with Kiran.