I felt compelled to share the story of my late son, Anthony Jaxon Llanas, who was born at Texas Children’s Pavilion for Women on October 16, 2014. Alongside his two older siblings, he was my pride and joy. I only knew him for one month, but in those 29 days, we developed a strong, unbreakable bond.
Unlike my previous pregnancies, this pregnancy was complicated. At 32 weeks, I was hospitalized at the Pavilion for Women. During my two-week stay, many of the nurses were wonderful and made me feel comfortable. Because of polyhydramnios (excessive amniotic fluid), I had an emergency C-section and delivered a handsome 4 pound, 7 ounce baby boy.
While still in my womb, I knew Anthony’s chances for survival would be uncertain. When I was 20 weeks pregnant, Anthony was diagnosed with esophageal atresia – a congenital defect where the upper esophagus does not connect with the lower esophagus and stomach – and tracheoesophageal fistula, an abnormal connection between the esophagus and the trachea. Two weeks later, doctors discovered he had coarctation or narrowing of the aorta. Anthony was also diagnosed with CHARGE syndrome which was not confirmed until after my son passed away peacefully in my arms.
Despite Anthony’s lengthy list of health problems, I was overjoyed to see his precious little face staring right at me, but at the same time, I was nervous about his prognosis. My Little Angel was wheeled away to the Neonatal Intensive Care Unit (NICU) at Texas Children’s Newborn Center where many of the NICU nurses took excellent care of him and answered all of my questions. He spent two weeks in the NICU before he was transferred to the Cardiovascular ICU, where a team of physicians and nurses closely monitored him.
As I struggled to stay positive while my baby was courageously fighting for his life, Anthony’s health problems quickly stacked up, one after another. Shortly after birth, Anthony was diagnosed with choanal atresia which prevented him from breathing through his nose. At 10 days old, doctors diagnosed him with severe immune system deficiency. His T-cells were lower than most normal babies at birth.
When Anthony was one week old, he had his first surgery to correct esophageal atresia, and two days later, he had surgery to treat choanal atresia. Anthony underwent bypass open heart surgery a few days later to repair the narrowing of his aorta, which eventually caused his heart rate to increase and be off rhythm. He was placed on an Extracorporeal Membrane Oxygenation (ECHMO) machine because his lungs and heart were too weak to function on their own. While he was on the ECHMO machine, his left lung collapsed. The day after his bypass, he was taken off the machine, but since his heart could not tolerate it, he was placed on the ECHMO machine for a second time. Sadly, Anthony’s extremely weak heart and lung were not cooperating.
On Wednesday, November 12, 2014, doctors told us Anthony’s heart rate was steadily dropping and that his body was not recovering from the multiple surgeries. He was getting sicker and they felt there was nothing more that could be done.
After hanging on for so long and enduring all of the surgeries to save his life, he passed away in my arms in a room full of people who loved him. He was by far the strongest and the most beautiful baby boy I’ve ever met. As all parents who’ve dealt with a loss of a child, I wish I could have done things differently to prevent his death, but with the support of Zoey’s Angels, they’ve helped me understand that I did as much as a parent could do and that his memory is not erased. If anything, it has just begun.
Four months after the tragic loss of my baby, I am back at work. While it’s been a difficult road for me and my family, my colleagues and manager, Lindi Stegeman, have been so supportive and I am so grateful to be working with such wonderful people.