Zoe’s Brave Journey: Battling HLHS at One Month Old

Meet Zoe, who after a little over a month old, began fighting for her life. Zoe was diagnosed with a heart condition known as HLHS (Hypoplastic Left Heart Syndrome). Hypoplastic (pronounced hi-puh-PLAS-tik) evolves as the result of underdevelopment of the heart’s left side. Diagnosis may be obtained during pregnancy with prenatal testing and ultrasound imaging. The images show irregularities in heart structure and function. On October 7, 2021, while still in the womb, Zoe’s parents were informed of the diagnosis. After much discussion and review, the team of physicians were able to map out a plan of care. It was intended for Zoe to be delivered via C-section and then be transported to Birmingham Children’s Hospital. There, she would receive a special medicine (prostaglandin) that would prevent the hole in her tiny heart from closing up before the first of three surgeries. The first surgery, known as the Norwood, would take place five days after birth. She would undergo the second surgery, known as the Glenn procedure, between 3-6 months old. The third, and hopefully final surgery known as the Fontan procedure, would take place between 3-6 years old.

On January 2, 2022 her mom tested positive for COVID which was just four days before Zoe’s scheduled arrival. This changed the plan of care for Zoe during and post delivery. Because of the positive test results, Zoe’s father would not be allowed to be present at birth or be with her mother in recovery the following days. After delivery, Zoe’s mother could not be in close proximity to Zoe or her father for ten days. One cannot imagine bringing a precious life into this world only to be told that your hands cannot touch her nor your arms hold her close. What became even more challenging, the ten day quarantine restriction would not allow Zoe to be held by her mother before or after the first surgery. Shortly after, Zoe’s father also tested positive for COVID.

“This means I can’t hold and love on her before her surgery…..pretty dang heartbreaking to say the least.”

T. N.

On January 6, 2022 at 10:23am, Zoe made her debut weighing 8 pounds 13 ounces, and she measured 21.26 inches long. What a debut it was! Her name, Zoe means “Life” and her little spirit says it all. With normal vitals, Zoe was transferred to the RNICU for IV line placement and meds. Afterwards, she was admitted to the Children’s Cardiovascular Intensive Care Unit (CVICU) and quarantined for precautionary measures.

Three days later she was able to reside in a regular ICU room which has been her home for the past few weeks. Every day is a gift and a challenge as the condition, without surgery, forces the heart to work harder. But Zoe continues to show her strength and beat the odds as well as win the hearts of those caring for her. All are blessed to be in her presence, as this little one expresses her joys, likes, and dislikes. Despite the changes that her tiny body is experiencing, her fight is bigger than anyone can imagine.

“It’s so hard seeing how perfect she is on the outside, but things like this remind us her little heart is very sick inside.”

The Centers for Disease Control and Prevention (CDC) reported that an estimated 1,025 babies are diagnosed with Hypoplastic Left Heart Syndrome each year, which factors out to be 1 in every 3481 babies born in the United States. 2 HLHS is just one of many known heart defects that occur in babies. Their cause remains unknown. Some are thought to be correlated to genetic makeup, while others are thought to be associated with lifestyle and or dietary practices of the mother. Zoe’s parents spend many thankful moments with her. They recognize the world of medicine’s is always progressing and moving towards progress. Her mother speaks in confidence, “Science and medicine have come a long way for patients like Zoe over the past 40 years. Back then she wouldn’t be here.”


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