My Preemie Died From Sepsis And This is What I Want Other Parents to Know

Alyssia Aguilar was a mom of one when she and her husband Mark learned they were expecting twins in 2017. The Houston-based couple was over the moon, but they were soon catapulted into a challenging, premature labor and delivery.

"It was just a different type of pregnancy," says Aguilar, who works as an illustrator. She started having contractions around 19 weeks and at 25 weeks, she was already dilating. "That's when they had to go ahead and just do the emergency C-section," she says.

The couple welcomed micro-preemies—a boy named Mark Anthony and a girl named Selena—who weighed barely 2 pounds each. They dove into life as NICU parents, making runs back and forth from the hospital and waiting by the phone for news.

Then, when he was just 16 days old, Mark Anthony began to show signs of an infection. Aguilar could tell her son was fighting for his life. "It was a double-edged sword to watch him decline, but at least we were with him, at least he wasn't alone," says Aguilar. "We all just loved on him and talked to him in those moments."

The baby boy lost his battle, and in the aftermath of tragedy, the grieving parents were left with many questions about what took their son's life. They were informed that he had sepsis resulting from an infection. The medical staff told Aguilar that the bacteria was carried into the baby's system through the tubing.

"They saw changes in his bloodwork overnight and were monitoring him closely, but weren't able to treat him better just due to his size and age," explains the Texas mom. "He just wasn't able to fight it because of his fragile size."

Later, the Aguilars turned their grief into action, advocating for other parents to know the first signs of sepsis by working with the Sepsis Alliance. The nonprofit organization is dedicated to raising awareness of sepsis by educating patients, families, and health care professionals to treat sepsis as a medical emergency.

• RELATED: What EVERY Parent Needs to Know About Sepsis

What Is Sepsis?

In short, sepsis is an exaggerated, overwhelming response by the body's immune system to respond to infection, and it can lead to tissue damage, organ failure, and death. People who are at higher risk include infants, seniors, those with chronic illnesses, and those with a weakened or impaired immune system.

Sepsis symptoms in children can include fever or low temperature (newborns and infants may have low temperature), fast heart rate, fast breathing, feeling cold or cold hands and feet, clammy and pale skin, confusion, dizziness or disorientation, shortness of breath, extreme pain or discomfort, and nausea and vomiting, according to the American Academy of Pediatrics (AAP). They note that many of these signs and symptoms alone are common in babies and children when they are sick. But when more than one of these signs and symptoms happen together, or when a baby or child just seems sicker than usual, parents should seek medical help.

Parents should keep an eye out for these signs after a child has had a medical procedure involving a urinary catheter or a central venous line or if they've had an infection (like a UTI, pneumonia, or a skin or bone infection).

Having more than one symptom—especially if there are signs of an infection or you fall into one of the higher risk groups—will likely cause your doctor to suspect sepsis.

Sepsis can also progress to severe sepsis. That means in addition to symptoms of the condition, there are signs of organ dysfunction, such as difficulty breathing indicating lung issues, low or no urine output pointing to kidney problems, abnormal liver tests, and changes in mental status, according to the Sepsis Alliance. Nearly all patients with severe sepsis require treatment in an intensive care unit (ICU).

How Common Is Sepsis in Kids?

According to the Centers for Disease Control and Prevention (CDC), each year, at least 1.7 million adults in America develop sepsis, and nearly 270,000 Americans die as a result of sepsis. More than 75,000 children develop severe sepsis each year, and almost 7,000 of these children lose their lives to the condition.

Preemies are especially vulnerable, because infants get the immunoglobulins and other chemicals to fight infections during the third trimester, explains Niranjan "Tex" Kissoon, M.D., FRCP(C), FAAP, the vice chair of the Global Alliance for Sepsis and co-chair of World Sepsis Day and the International Pediatric Sepsis Initiative.

• RELATED: Mom Shares Photo of Her Son's Sepsis Symptoms to Warn Other Parents

Dr. Kissoon explains that being on a ventilator or having an intravenous line (IV) of any kind can elevate a fragile baby's risk, as any sort of breach to the skin could also lead to the introduction of bacteria—which is the most common cause—or a viral infection that could lead to sepsis.

The condition has also never been more important to discuss, as sepsis is a deadly complication of COVID-19. In fact, researchers say most COVID deaths in ICUs in infected patients are produced by viral sepsis. It's for that reason that when a child comes in with a possibility of COVID, doctors still have to consider and treat sepsis, explains Dr. Kissoon.

How Is Sepsis Prevented and Treated?

The good news: Research shows that as many as 80 percent of sepsis deaths could be prevented with rapid diagnosis and treatment.

Dr. Kissoon says that strict sanitary measures, like hand-washing and wearing gloves as well as goggles, are key when handling babies in the NICU. It can also be helpful for parents to check on the usefulness of every line, tube, or catheter, and ask that they're removed as soon as possible.

Then, beyond prevention, Dr. Kissoon urges health care providers to do labs to see if there are any abnormalities in a child's blood count if they are exhibiting signs of sepsis. "The white blood count can go higher or lower," he explains. And while awaiting results, doctors can preemptively treat a baby with antibiotics that will cover most of the organisms that are prevalent in cases of sepsis.

In the case that sepsis is diagnosed, it's treated with a combination of antibiotics, IV fluids, and in some cases, additional therapies like corticosteroids (to reduce inflammation), vasopressors (if blood pressure drops too low), and oxygen.

Why Raising Awareness Is Key

Because early diagnosis saves lives, Dr. Kissoon urges parents to keep their eyes peeled for signs and symptoms—and then advocate for themselves and their child. "If you are concerned about your child, it is always reason to ask the physician or medical personnel, 'Have you considered the diagnosis of sepsis?'" says Dr. Kissoon.

To spread the word, Aguilar worked with the Sepsis Alliance to create Bug, a colorful ladybug character now featured in the organization's PSAs, coloring sheets, and other resources. "She gives children a way to see sepsis and help them learn about it," explains the illustrator.

Through awareness and regular practices such as hand-washing, as well as masking and social distancing, parents and children can help keep this devastating condition at bay.