Born into battle: A mother’s firsthand account of Holly’s fight for life

Holly was born at 36 weeks, a healthy baby who came home with us just days later. For one week, everything felt normal.

Then, on November 4, everything changed.

We sat down to dinner around 5 p.m., earlier than usual. I was holding Holly when I noticed her skin felt ice cold. She looked gray. Something in me knew immediately that something was terribly wrong. I've said many times since then: if we had waited until our usual dinnertime at 7 or 8 p.m., she might not be here today.

Within an hour, we were in an emergency room at Loma Linda University Children's Hospital (LLUCH). Holly was intubated and struggling to breathe, and her temperature had dropped to 91 degrees. By midnight, she was transferred to the Neonatal Intensive Care Unit (NICU). The next morning, doctors told us her body was in septic shock. One by one, her organs were beginning to shut down, including her heart. No one yet knew why.

Searching for answers

From the moment we arrived, the LLUCH multidisciplinary team worked tirelessly for answers. One of the first physicians to care for Holly was neonatologist Monalisa Patel, MD. She spent time with us and ordered viral testing.

By the end of November 5, we learned Holly had contracted enterovirus. Unlike bacterial infections, there was no proven antiviral treatment available. The only option was to support her tiny body while she fought the virus herself.

That same night, Patel began treatments to support her immune system and monitor her organs. Around that time, hospital chaplain Seth Kwarteng-Prekoh came to see us.

At first, his presence scared me. I thought chaplains were only called when someone was dying. But he prayed over Holly every single day.

In the middle of everything, he became one of our greatest sources of strength.

A fragile path forward

The days that followed were relentless. Holly's lungs began to fail. She developed pneumonia. Then came myocarditis, an inflammation of her heart caused by the virus. Every day seemed to bring a new diagnosis, a new fear.

We had gone from a perfectly healthy newborn to facing the possibility that, even if she survived, she might never be the same. The thought of lifelong complications was overwhelming.

Still, Holly fought.

She began to improve. She was taken off the breathing tube, needed less support, and started feeding normally. For the first time, we heard talk of going home.

Then, on November 16, everything unraveled again.

Holly had a severe reaction to a blood pressure medication, and her kidneys shut down. Fluid built up in her body, straining her heart and lungs. She was re-intubated and placed on a high-frequency ventilator. Blood tests were drawn every three hours around the clock.

It felt like every organ was competing against the others, helping one would hurt another. Doctors were forced to make impossible decisions, carefully balancing each intervention.

Specialists from multiple disciplines stepped in, including pediatric nephrology, cardiology, infectious disease and critical care. My husband and I began attending rounds daily, determined to understand every change.

On Nov. 20, we sat down with a cardiologist who told us that if Holly could not come off the medication supporting her heart, she would need a transplant, or we would have to let her go.

That was the hardest day of our lives. Even after everything she had survived, we were still facing the possibility of losing her.

A different path

Patel continued to delve deeper into Holly's labs and organized weekly meetings with all of Holly's specialists so they could collaborate in real time.

Patel also began researching and found an investigational antiviral drug, something only about fifty people in the world had received.

She called my husband, who was in the hospital parking lot, and told him we needed to act quickly. He rushed back inside to sign the paperwork.

Through the night, Alvaro E. Galvis, MD, a pediatric infectious disease specialist, worked to secure emergency authorization from the FDA. Within 48 hours, the medication arrived. Holly began treatment immediately.

It was new. It was experimental. But it was her best chance.

A turning point

The response was almost immediate.

Within two days, Holly improved so dramatically she was able to come off the ventilator. Her breathing stabilized. Her heart function began to recover. With each passing day, she needed less support. Within weeks, the virus was nearly undetectable.

One by one, her organs began to recover.

For the first time, we felt like we were moving forward.

Holly spent Thanksgiving, Christmas and New Year's in the NICU. But instead of mourning her, we were holding onto hope. We were grateful beyond words to still have her.

Gradually, she came off every life-sustaining machine. She began breastfeeding like any healthy baby. After two long months, we finally prepared to go home.

Looking back, I truly believe Holly would not be here without the team at LLUCH. The doctors and nurses who refused to give up and were willing to go beyond traditional treatments to save her.

What we experienced wasn't a miracle in the way people often think. It was constant, relentless work, care delivered 24 hours a day, seven days a week. It was people choosing, over and over again, to fight for a life.

A life restored

Today, Holly is 7 months old. She is thriving, living like a healthy baby. Her heart is recovering, and she no longer faces a future of transplant.

She is here.

And if there's one thing her story has taught me, it's this: when it feels like you've reached the end of the road, sometimes you have to create more road.

- Megan