LDL. Born With Hypoplastic Left Heart Syndrome, Luna Defied the Odds—Now 4 Years Old and Thriving

The rhythmic thump of my baby’s heartbeat was the most beautiful sound I had ever heard. My husband Donovan and I had been overjoyed when we learned we were expecting a little girl. After moving from Auckland to the Cayman Islands, we didn’t plan on starting a family right away. But when I found out I was pregnant in September 2015, we couldn’t have been happier. When we learned we were having a girl, we decided to name her Luna, a name that meant “moon” in Italian—a fitting choice for our precious baby.

But during a routine scan at 28 weeks, the sonographer’s face changed. She noticed that the right side of Luna’s heart appeared enlarged. Although she reassured us it wasn’t an immediate concern, she advised us to get it checked again once we returned to New Zealand. What followed was a whirlwind of emotions.

Once we were back in Auckland, our next scan revealed something far more alarming: Luna had a condition called hypoplastic left heart syndrome. This meant the left side of her heart hadn’t formed properly and couldn’t pump blood effectively. She was missing half of her heart. The doctor’s words were crushing. “It’s likely she won’t survive a week outside the womb,” he told us. We were given a difficult choice—terminate the pregnancy or prepare for palliative care after birth. There was a slim chance Luna could survive surgery, but the doctors wouldn’t know for sure until after she was born.

Devastated yet determined, we chose to give Luna a fighting chance. At 40 weeks, Luna was born by caesarean section. Holding her for the first time in the NICU, she looked perfect—like a pretty pink marshmallow. But the reality of her condition set in. Luna was immediately rushed into surgery at just two days old. Surgeons installed a shunt in her heart to help blood flow to her lungs. The surgery lasted 13 hours, but it was a success.

However, Luna’s journey was far from over. Two weeks later, a CT scan revealed that the shunt hadn’t been inserted far enough, so she underwent another surgery to have it corrected. Despite all the odds, Luna was released from the hospital just seven weeks after birth. But the challenges continued.

At five months old, Luna underwent her third open-heart surgery to redirect blood flow from her upper body to her lungs. Watching her slowly recover outside the hospital walls was incredible. She would often call the scar on her chest her “zipper,” and it didn’t faze her. Luna’s strength was inspiring.

By the time she was two, we were expecting another baby. Luna was excited to be a big sister, showering my belly with kisses. But we knew her heart would need another surgery to help it grow stronger. When the day arrived in April 2019, I was filled with anxiety. “I love you more than all the stars in the sky,” I whispered to her. The surgery was successful, but just days later, Luna developed a rare condition called chylothorax, where lymphatic fluid began accumulating around her lungs.

For the next four months, Luna’s condition worsened. She was severely underweight, her hair wasn’t growing, and her skin had lost its vibrancy. Doctors were stumped as to how to stop the fluid buildup. The situation grew so dire that we were told we might only have four more weeks with her if things didn’t improve.

In August 2019, just two weeks after we welcomed our son Gray, Donovan and I made the heartbreaking decision to take Luna home, so we could create precious memories together. But then something incredible happened. At home, Luna’s condition started to improve. She began eating better, was less breathless, and seemed to be gaining strength. Within weeks, the fluid around her lungs miraculously began to drain.

Now, at four years old, Luna is thriving. She started preschool earlier this year and is enjoying time with her friends. Though she can’t participate in contact sports or play in the playground, Luna loves dancing with her friends. She enjoys playing with Gray and is always the first to give him a kiss.

When asked what she wants to do when she grows up, Luna says, “I want to be a nurse on the heart ward and help kids like me.” It fills me with pride to know that despite everything she’s been through, Luna’s heart is filled with kindness and determination.

Our girl may only have half a heart, but it’s undoubtedly the biggest heart of all.

The rhythmic thump of my baby’s heartbeat was the most beautiful sound I had ever heard. My husband Donovan and I had been overjoyed when we learned we were expecting a little girl. After moving from Auckland to the Cayman Islands, we didn’t plan on starting a family right away. But when I found out I was pregnant in September 2015, we couldn’t have been happier. When we learned we were having a girl, we decided to name her Luna, a name that meant “moon” in Italian—a fitting choice for our precious baby.

But during a routine scan at 28 weeks, the sonographer’s face changed. She noticed that the right side of Luna’s heart appeared enlarged. Although she reassured us it wasn’t an immediate concern, she advised us to get it checked again once we returned to New Zealand. What followed was a whirlwind of emotions.

Once we were back in Auckland, our next scan revealed something far more alarming: Luna had a condition called hypoplastic left heart syndrome. This meant the left side of her heart hadn’t formed properly and couldn’t pump blood effectively. She was missing half of her heart. The doctor’s words were crushing. “It’s likely she won’t survive a week outside the womb,” he told us. We were given a difficult choice—terminate the pregnancy or prepare for palliative care after birth. There was a slim chance Luna could survive surgery, but the doctors wouldn’t know for sure until after she was born.

Devastated yet determined, we chose to give Luna a fighting chance. At 40 weeks, Luna was born by caesarean section. Holding her for the first time in the NICU, she looked perfect—like a pretty pink marshmallow. But the reality of her condition set in. Luna was immediately rushed into surgery at just two days old. Surgeons installed a shunt in her heart to help blood flow to her lungs. The surgery lasted 13 hours, but it was a success.

However, Luna’s journey was far from over. Two weeks later, a CT scan revealed that the shunt hadn’t been inserted far enough, so she underwent another surgery to have it corrected. Despite all the odds, Luna was released from the hospital just seven weeks after birth. But the challenges continued.

At five months old, Luna underwent her third open-heart surgery to redirect blood flow from her upper body to her lungs. Watching her slowly recover outside the hospital walls was incredible. She would often call the scar on her chest her “zipper,” and it didn’t faze her. Luna’s strength was inspiring.

By the time she was two, we were expecting another baby. Luna was excited to be a big sister, showering my belly with kisses. But we knew her heart would need another surgery to help it grow stronger. When the day arrived in April 2019, I was filled with anxiety. “I love you more than all the stars in the sky,” I whispered to her. The surgery was successful, but just days later, Luna developed a rare condition called chylothorax, where lymphatic fluid began accumulating around her lungs.

For the next four months, Luna’s condition worsened. She was severely underweight, her hair wasn’t growing, and her skin had lost its vibrancy. Doctors were stumped as to how to stop the fluid buildup. The situation grew so dire that we were told we might only have four more weeks with her if things didn’t improve.

In August 2019, just two weeks after we welcomed our son Gray, Donovan and I made the heartbreaking decision to take Luna home, so we could create precious memories together. But then something incredible happened. At home, Luna’s condition started to improve. She began eating better, was less breathless, and seemed to be gaining strength. Within weeks, the fluid around her lungs miraculously began to drain.

Now, at four years old, Luna is thriving. She started preschool earlier this year and is enjoying time with her friends. Though she can’t participate in contact sports or play in the playground, Luna loves dancing with her friends. She enjoys playing with Gray and is always the first to give him a kiss.

When asked what she wants to do when she grows up, Luna says, “I want to be a nurse on the heart ward and help kids like me.” It fills me with pride to know that despite everything she’s been through, Luna’s heart is filled with kindness and determination.

Our girl may only have half a heart, but it’s undoubtedly the biggest heart of all.