My Doernbecher Story

Isaac's Story - Doernbecher Children's Hospital

Isaac's Story

By Tracy, Isaac's mom

Hypertrophic Cardiomyopathy (HCM) is a genetic disease that runs in our family. It means the heart muscle is abnormally thick making it difficult for the heart to pump blood. Our oldest son, Chase, doesn't have HCM, but at Isaac's preschool checkup, they did find a heart murmur. After further testing, our pediatrician referred us to Doernbecher where Isaac had additional tests and we met with Dr. Misty Carlson. We learned Isaac did have HCM, but it was mild and only required an echocardiogram (EKG) once a year.

Shortly after Isaac's eighth birthday we were sitting on the sidelines at Chase's flag football practice when Isaac said, "Mom, my heart hurts." I took his pulse, and it was beating really fast and then skipped a quite a few beats. This alarmed me. Dr. Carlson scheduled a stress test. Soon after the test she called and said she'd reviewed Isaac's case with the other pediatric cardiologists at Doernbecher. She passed Isaac's file on to Dr. Seshadri Balaji, because HCM is his specialty.

Isaac had an MRI done which showed the muscle in his heart had grown significantly. Dr. Balaji said if it continued to grow at that rate it could be dangerous. We could not predict how fast or slow the muscle would grow. His dad and I were told that eventually we could find ourselves needing to have an adult with Isaac 24/7 with an AED or he could have surgery to implant an Implantable Cardioverter Defibrillator (ICD) which would shock his heart if it did indeed stop beating.

Dr. Balaji told us he was not making the suggestion of surgery lightly. He wouldn't recommend the surgery if he didn't feel it could very possibly be life-saving for Isaac. He said, "If this were my child, I would do the surgery." Through lots of prayer and trusting Dr. Balaji, we decided to move forward with the surgery.

Isaac's surgery would be complicated due to his young age. We needed an additional pediatric cardiac surgeon: Dr. Stephen Langley. They scheduled us for Doernbecher's newest operating room which had 360-degree X-ray capability. This new technology allowed the surgeons to run X-rays during the surgery to make sure the ICD was implanted correctly. On July 29, 2013, Isaac had an ICD/pacemaker placed in his abdomen.

Isaac's full recovery from his surgery was six weeks but he was back on his feet in only a few weeks. I was nervous to send him back to school but he assured me, "Mom, I'm fine". He's on a performance unicycle team and loves to ride his bike, skateboard and rollerblades. He's even back to doing flips on the trampoline.

One of my favorite moments at Doernbecher was when one of their volunteers came into Isaac's room and offered to play the guitar and sing for him. He let Isaac choose the songs. It was so wonderful to witness. Now, whenever I hear "Count on Me" by Bruno Mars, I get teary.

Everyone at Doernbecher was really great! The anesthesiologist was amazing at making Isaac laugh. Dr. Balaji was and is so personable. We are so blessed by the Doernbecher doctors, nurses and staff for such a great experience and continued care.

 

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