Hector’s Story

Hypoplastic Left Heart Syndrome

Hector's journey began on May 22, 2009, moments after birth when he suddenly turned cyanotic (blue). Hector Sr. and I realized something was really wrong when he was quickly taken from the delivery room so that doctors could begin a series of tests. Hours later cardiologists came to my room and informed us that Hector had a rare and serious congenital heart defect called Transposition of Great Arteries, which meant that his aorta and pulmonary artery (the two major arteries that carry blood away from the heart) were "transposed" from their normal position and that he would require open-heart surgery as soon as possible. He was taken by ambulance that same day to Rush University in Chicago, where they specialize in congenital heart defects, and was soon scheduled for surgery. Cardiac surgeons would perform the arterial switch (this procedure "switches" the aorta and pulmonary artery to the proper locations) four days later.

Finally the day we will never forget, the day Hector got a second chance of life, surgery date May 26, 2009. The wait was grueling and very stressful, it was the longest day of our lives and one we will never forget. For a parent not to know if their child is going to live is one of the worst feelings in the world. Thank God the surgery was a success and Hector was well on his way to recovery. Unfortunately, a few days before we were to be discharged it was discovered that Hector had an infection in one of his arterial lines. He had to stay another 10 days for a dose of antibiotics through his I.V. He was in the hospital for almost a month and we were with him every step of the way. Finally, on June 17, 2009, he was discharged to two new, very frightened parents who knew nothing about heart defects before this but knew they would do everything in their power to protect him and care for him. Hector came home on five different medications that were to be given around the clock and he was on oxygen. Thank God Hector will not remember those days when we had to tape his oxygen mask to his face. As for us, we will never forget. The next few months were great and we had our baby boy home.

In August 2009 Hector was scheduled for cardiac catherization, which is a minor surgery to relieve narrowing in the arteries. Cardiologists place a balloon in the artery and inflate it to open it up. This required an overnight stay for observation. The next morning an echo showed no changes in the narrowed artery and we were told to follow up in six months. We returned in January 2010 for an echo and were ecstatic to find out that the artery showed "significant growth." On our last visit in July the echo showed no changes in the arteries so we took it as good news. Doctors say sometimes the "ballooning" takes years to show full results so we are being optimistic about future results. We can only pray that his future visits will have positive results and there will be no need for a second surgery.

Today, Hector is the most active, playful and handsomest baby ever. You would never know he went through so much in his young life. He is reaching all milestones and thriving. Everyone loves him and we cannot imagine life without him. This experience has taught us to cherish every day and everyone for you never know when your life will change. Seeing our son smiling and playing makes everything worthwhile. We thank God that we have the technology today to keep heart babies alive and thrive well into adulthood. Our son's defect has introduced us to a whole new community of heart families that we rely on for advice and words of wisdom. We do not know what the future holds but we do know that we will always accompany Hector on his journey and never let him feel that he is alone.