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Upon finding out that we would be welcoming Baby No. 2 into our family we soon found out via ultrasound that our newest addition could possibly have a heart condition. At each ultrasound the doctor noticed something that he called a “bright spot.” Naturally, we were worried and upset but the doctor assured us that it was nothing to worry about and that more often than not the “bright spot” would go away by the end of pregnancy. The day Eli was born, he had some respiratory problems but was otherwise healthy. There was no heart condition found. After spending longer than anticipated in the hospital due to complications that are not common in full term babies we were ready to continue our new journey as a family of four at home.
Over the course of the next 4 months we had regularly scheduled checkups that went as expected. There was no sign of a heart condition. At Eli’s four month checkup the doctor listened to his heart as usual except this time it took longer and he listened in more areas than usual on both his chest and back. When his checkup was complete the doctor sat down to go over his findings. He said “I am hearing something abnormal in Eli’s heart beat. I think we should send Eli over to Arkansas Children’s Hospital and have an echocardiogram done to look into it a little more. It’s probably nothing to worry about but we should check just in case.” He told us that once he got the results from the cardiologist he would call us to discuss whether anything was found. He said that we most likely wouldn’t hear anything for approximately two weeks.
That same day we received a phone call. As soon as I answered I heard “Hi Whitney. This is Dr. Davis.” I knew right then that there was a problem by the tone of his voice and the fact that he was calling me the same day rather than two weeks later like he anticipated. He proceeded to tell me that Eli has a hole in his heart that is located between the top two chambers. The medical term for this condition is Atrial Septal Defect (ASD). This condition allows oxygenated blood (good blood) to mix with un-oxygenated blood (bad blood). It also leads to an enlarged heart from the extra work that the body and heart have to put forth. He said we would need to meet with a cardiologist to determine what procedure would need to be done to fix the ASD based on the size of the hole or to find out if it would heal on its own over time. Soon thereafter we met with the cardiologist who told us that we should not expect the hole to close by itself over time due to its size and that a procedure would need to be done. It was however too early to determine if it would be a non-invasive or invasive procedure. Either way the procedure is usually not done until between three or five years of age so we scheduled a follow up appointment for a year later. As a parent, waiting a year to find out how severe your child’s heart condition is and what procedure will be necessary to fix it is almost unbearable.
One year later, May 15th 2013, we found ourselves back in the same doctor’s office. We went through another echocardiogram, which is extremely stressful and challenging for a one and a half year old, and met with the cardiologist. This time the cardiologist described the hole as being “large” and the type that will require an invasive procedure to close, meaning open heart surgery. He told us that over the course of the next couple of weeks he would meet with his team of doctors and surgeons in Little Rock to discuss what course of action they thought would be the most beneficial. He said that for some unknown reason the surgeons will oftentimes choose to push surgery off for up to six months at a time and in the mean time he would like to see us back for a follow up in six months. We left the doctor’s office that day not expecting to hear anything for a couple of months. Less than a week later my phone rang and the voice on the other end said “Hi this is ____ from Arkansas Children’s Hospital in Little Rock. I am calling to schedule heart surgery for Eli Brown.” I was completely shocked and could barely speak. This call meant that the entire team of doctors and surgeons felt that Eli’s condition was bad enough that it needs to be fixed almost immediately. After a few moments of silence and a few mumbled questions, Eli’s open heart surgery was scheduled for August 1st 2013.
And so our journey continues……………
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