Little Hearts

Tracker, born 2009

At 4 months old, our son Tracker was referred to a cardiologist because of a heart murmur. He had an x-ray, ECHO, & EKG done resulting in the doctor telling us he had an innocent heart murmur that he would more than likely outgrow. He said the only reason we would need to see him again would be if our regular doctor heard any changes to his heart. We breathed a huge sigh of relief, brought our baby boy home and resumed our lives. However, as we continued to see our regular pediatrician for check ups, she mentioned to us that the sound of Tracker's murmur was getting continuously louder and harsher sounding. This went on for a couple months and when Tracker was 14 months old, she instructed us to come back to her office in exactly one month for a follow up. The pediatrician wanted to compare our sonís murmur within a one month time period.

My husband and I were extremely concerned although we tried to remind ourselves that we had been to the cardiologist and gotten a good report. We tried to make ourselves believe that our pediatrician was just being thorough. We returned a month later and our doctor said the noise Trackerís heart was making was much too loud and harsh for her to feel comfortable with it being an innocent murmur. We went back down the cardiologist in Albany where they again performed an X-ray, EKG, and ECHO. We were terrified, here we were thinking our son had an innocent heart murmur and things were fine but again we found ourselves in the waiting room of a heart doctor trying to hold our composure for the sake of our silly little 15 months old boy.

Dr. Doyle, our sonís cardiologist who we have come to adore, came back into the room, sat down, looked us right in the eyes and said ďYes, Tracker has a sub aortic membrane that has grown to cause his aortic valve to be over 75% blocked. It has caused the valve to tear and instead of filtering the blood properly now it is leaking through the tear in the valveĒ. I remember screaming with fear but then immediately remembering I was holding my baby boy who my screaming would only frighten. My husband said to the doctor, "OK, so he needs medicine, letís get him on it and fix this". Dr. Doyle replied, "No Iím sorry it doesn't work like that your son needs open heart surgery". There are no words strong enough to describe the emotions we felt when being told their baby needed open-heart surgery, none at all! We wanted to pick up our baby and run far, far away. Away from the pain and struggles and strangers and fears that he was about to face. But then the reality of being a parent kicks in and tells you take a deep breath pick up your baby and provide for him what he needs to save his life. Itís a simultaneous fight with yourself to grab your little one and run because you feel like your purpose is to protect your baby or to do what you know needs to be done and hand your baby to an anesthesiologist for life saving open heart surgery.

Today, almost three years later our incredible, smart, charming, gorgeous, compassionate "Little Bear" is about to start Pre-K ! He sees his cardiologist every three months for ECHOs, EKGs, and check ups. The sub aortic membrane that was removed during his surgery has come back and his leak is still there, yet not to the extent it was before his first surgery. And today in this moment he is stable which is the greatest news you could ask for. Further surgery is unfortunately most likely to be necessary however we choose to focus on and cherish each day as it comes. As a parent itís a constant battle to keep your worries in check and instead focus on the here and now, but like our cardiologist Dr.Doyle says "Whatís going happen tomorrow is going to happen tomorrow, no matter how much you worry". So today we celebrate and love on our "Little Heart Hero" every second that we get.

Story by Trackerís mom, Emily Ė New York

Dominic, born 2012
« previous
Brittany, born 2009
next »

Become a Member Arrow
  • No cost to join
  • Access to support services
  • Connect with other parents
Share your Stories of Hope Arrow

Have a baby that is newly diagnosed with a CHD? Read our stories of HOPE from other people just like you.

Little Hearts, Inc.

P.O. Box 171, Cromwell, CT 06416
Phone/Fax (860) 635.0006  Toll Free 866.435.Hope
SecurityMetrics for PCI Compliance, QSA, IDS, Penetration Testing, Forensics, and Vulnerability Assessment Web Solutions Connecticut CT Web Design & Development Company