Montclair Dad Fights For Change In Late Daughter’s Name: ‘Lulu’s Law’

MONTCLAIR, NJ — It was nearly a decade ago that Ana Lucia Haynes – affectionately known to her family as “Lulu” – skied her first black diamond slope. It was typical of the 4-year-old’s “big, exuberant personality,” along with a love for dancing, art, music and simply “bringing joy to everyone she met,” according to her father, Lukas Haynes of Montclair.

Later that year, Haynes started to come down with flu-like symptoms. Concerned, her family brought her to a hospital emergency room, where she was tested and evaluated – and scheduled for an appendectomy. Afterwards, her parents were told that she was expected to have a normal recovery.

About 24 hours later, she passed away. And according to Haynes, no pediatrician, doctor, nurse or surgeon ever mentioned the word “sepsis” – which was eventually diagnosed as the cause of her death.

Now, nine years after her tragic passing, the young girl’s family continues to push for proposed federal legislation written in her name: Lulu’s Law.

What is sepsis? According to the Centers for Disease Control and Prevention:

“Sepsis is the body’s extreme response to an infection. It is a life-threatening medical emergency. Sepsis happens when an infection you already have triggers a chain reaction throughout your body … Without timely treatment, sepsis can rapidly lead to tissue damage, organ failure, and death.”

Last week, Haynes’ father was among the advocates who commemorated World Sepsis Day at a Capitol Hill reception in Washington D.C. hosted by the Sepsis Alliance, a national nonprofit that advocates for “a world in which no one is harmed” by the deadly medical condition.

At the event, Haynes and U.S. Rep. Mikie Sherrill (NJ-11) – who sponsored the previous version of Lulu’s Law last year in the House – joined other advocates to push for more federal action to address the “urgent public health crisis” that sepsis poses to the nation.

According to the Sepsis Alliance, the condition impacts 1.7 million Americans every year and takes more lives than prostate cancer, breast cancer and opioid overdose combined. It is both the number one cost of care (at $62 billion annually) and cause of death in U.S. hospitals, and leaves many survivors with debilitating after-effects.

If it gets a final green light, Lulu’s Law would direct the U.S. Department of Health and Human Services to enact a National Sepsis Action Plan and create a “data trust” that would serve as a central hub of information, among other directives.

“Lulu would be very proud to have her name on a serious national attempt to treat and save lives,” her father said after last week’s event.

But there are still too many questions that remain, he added.

“What triggers sepsis?” he asked. “How can we diagnose sepsis more quickly and effectively? How can we improve treatment to save lives like Lulu’s?”

“That’s what Lulu’s Law will do: help us answer the unanswered questions and save lives,” Haynes urged.

Other parents who attended the Capitol Hill reception included Alice Tapper, the daughter of Jake and Jennifer Tapper, whose appendicitis misdiagnosis led to life-threatening sepsis episode in November 2021.

“I got sick with severe abdominal pain, a fever of 102 degrees and vomiting,” Tapper recalled. “My parents took me to a hospital. They couldn’t figure out what was wrong with me, and why my condition wasn’t improving. At the time, we didn’t know enough to ask the question the CDC recommends: ‘Could this infection be leading to sepsis?’”

“I’m speaking out for others who do not have a voice,” Tapper said. “Hospitals need to believe patients, listen to parents, and act fast if and when they see the signs and symptoms of sepsis.”

“My husband Jake and I are so grateful that Alice survived,” Jennifer Tapper said. “But we are also angry that her infection was missed by so many doctors over so many days, and she could have died as a result.”

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