Half a heart: Aiden's story
If you were to look at our happy, mischievous, funny and extremely active almost 2-year-old, you would never think he only has half a heart. Never. But he does. Aiden was born with hypoplastic left heart syndrome (HLHS). The left side of his heart did not develop. I was 20 weeks pregnant when we found out. It was probably the worst day of our lives. We were told he would have to undergo at least three open heart surgeries, one of which being in the first week of life, and we were also told there was a probability he would not survive. The weeks that followed that diagnosis were such a blur of tears, prayers, desperation and truly just grieving the loss of the life we had envisioned as a family.
We are from Benton, Louisiana, and there is not a surgical center locally that could take care of Aiden, so we had to choose a hospital to deliver Aiden and have his surgeries. After doing some research and comparing hospitals using the U.S. News & World Report rankings, we found out the third ranked heart center (now second ranked) was four hours away from home at Texas Children’s Hospital. We began coming to Texas Children’s Pavilion for Women for prenatal appointments with the Fetal Center. Our Fetal Center coordinator, Christie, took so much time to set up appointments with everyone we would need to meet prior to Aiden’s delivery and surgery. She was a familiar voice on the line that held our hand through this whole process. We met with a fetal cardiologist, Dr. Ayres, who greeted us with a hug and then spent hours checking out every detail of Aiden’s heart through a fetal echocardiogram – the sonographer Maggie was so thorough and skilled, but also so very compassionate as to what we were going through. We also met the OB who would deliver Aiden, Dr. Ivey, who made us feel so incredibly comfortable and well taken care of – coupled with lots of laughs. We toured the CVICU (cardiovascular intensive care unit) and saw where Aiden would be after birth and during his recovery from his first open heart surgery, the Norwood. We also met with Dr. Heinle, one of our heroes, the surgeon who operated on my baby’s tiny heart at just 4-days-old. To be able to do all of this prior to having Aiden was just invaluable. Having everyone involved in Aiden’s care under one very large roof was a great comfort, but also a huge convenience.
Aiden was born on May 19, 2014. My birth experience at Texas Children’s Pavilion for Women was really great, even though we faced some pretty scary stuff once Aiden made his appearance. After I kissed my newborn, he was whisked away to the CVICU where he received such excellent care before his first surgery. He spent roughly six weeks inpatient recovering from the Norwood and then we were discharged to our Houston apartment where we would stay until his next open heart surgery, the Glenn, at almost 4-months-old. About two weeks later, we were back home as a family of four in Benton, Louisiana, after living apart for five months. It was one of the happiest days of my life, truly.
To this day, when we go back to Texas Children’s for checkups, I feel at home. We still see the fetal coordinator Christie each visit just so Aiden can give her a big slobbery kiss and Dr. Ayres is now Aiden’s cardiologist. We will see Dr. Heinle again soon when it’s time for Aiden’s next surgery. I still see nurses from the CVICU and Heart Center and they remember us and my sweet baby. It helps to have so much love and care surrounding you when you’re dealing with your child and his very complex heart. This journey in the heart world is not easy. Not a second of it. But we have hope because of Texas Children’s Hospital.