Olivia’s story: Recovering from necrotizing enterocolitis

Emily and Leo pose with Olivia, who had necrotizing enterocolitis, next to an open field.
Emily and Leo Martins with Olivia. [PHOTOS COURTESY OF THE MARTINS FAMILY]

Any new baby’s arrival comes with a long list of questions for parents. Will the baby sleep through the night, for instance, and what type of diaper is best? When babies are born premature, however, such questions typically give way to greater uncertainties. Will the baby’s internal organs develop and how long will they have to stay in the hospital?

Born premature, just short of 32 weeks, Olivia Martins had spent her first five days in intensive care at the Brigham and Women’s Hospital where she was born weighing 3 pounds, 14 ounces. Despite her early arrival, everything seemed to be going well; Olivia’s heart and lungs were developing and getting stronger every day. Then one morning her mother, Emily, got a phone call as she was getting ready to head to the hospital. Doctors at the Brigham suspected Olivia had necrotizing enterocolitis.

Necrotizing enterocolitis is a serious condition of the intestines that affects between 5 and 10 percent of premature babies. Because they are so delicate, premature babies’ intestines are prone to damage, either through infection or lack of oxygen. As intestinal tissues die, the wall of the intestines can perforate, allowing intestinal fluid or stool to seep into the abdomen where it can cause severe infection.

A meeting with surgeons

Emily and her husband Leo rushed to the hospital. By the time they arrived, clinicians had confirmed the diagnosis. Soon, surgeon Benjamin Zendejas-Mummert from Boston Children’s Hospital was explaining that Olivia needed emergency surgery. “It happened very fast,” Emily recalls. “Olivia’s condition went from fairly stable to extremely serious in a very short time frame.” She and Leo accompanied Olivia across the enclosed bridge connecting the Brigham to Boston Children’s and watched as clinicians wheeled their daughter into surgery.

Later that afternoon, Emily and Leo were relieved to learn that the surgeons had only had to remove a small portion of Olivia’s intestines. As a temporary measure, she needed a colostomy or “stoma” to divert stool from the diseased area and allow it to heal. The stoma and the bag attached to it to collect stool would remain on the outside of Olivia’s belly until she was older and strong enough for another surgery to reconnect her intestines.

Turning point

A few days after the surgery, at a moment when Emily was feeling overwhelmed by fear and uncertainty, she met nurse Christine Salvucci. “Christine found me sobbing next to Olivia’s incubator,” says Emily. “She acknowledged that I was upset, then she told me why, as a nurse, she was not worried.” Salvucci explained that from a clinical standpoint, Olivia was on the right track. “Her words and her kindness helped calm some of the fears that were plaguing me at that point.”

A nurse holds Olivia, who had necrotizing enterocolitis, in intensive care.
Nurse Christine Salvucci helped make Olivia’s time in intensive care less frightening for Emily.

Up until then, Emily wasn’t sure how she fit in with Olivia’s new care team but this conversation helped shift her point of view. “Once I got my bearings, I quickly found I was part of the team. I was able to ask the questions I needed to ask and was fully on board with the plan moving forward.”

In the beginning of May, right around the time of Olivia’s original due date, Dr. Zendejas and his colleague performed a second surgery to reattach the two ends of Olivia’s intestines. Unfortunately, the connection did not heal well and a day later, the surgeons had to replace the colostomy. After one more week in the hospital, Olivia went home for the first time.

At home with Olivia

Emily and Leo spent the summer learning how to be new parents, taking periodic trips to Boston Children’s so doctors could monitor Olivia’s ongoing development. In October, seven months after she was born, Olivia had her final surgery. This time, surgeons were able to successfully reconnect her intestines and remove the colostomy for good. After one more week in the hospital, she returned home.

When Emily looks back on the first months of her daughter’s life, she remembers the terror of having a sick child and the clinicians who helped make Olivia’s hospitalization bearable. “It’s heartbreaking and scary when you first realize what you’re dealing with. But to have people like Christine and Dr. Zendejas take the time to explain the situation and make sure we understood what was going on was so, so important.” 

Olivia, who had necrotizing enterocolitis, takes a step toward a ball with her mother's help.
Olivia continues to get stronger every day.

Just recently, Olivia started crawling and the Martins’ house echoes with her energetic babbling. The fact that she has not yet started to form words has not slowed her down. Rather, Olivia’s voice rises and falls in a near-constant stream as she moves through various inflections and tones. “She’s a chatty Kathy,” laughs Emily. “We are thrilled and proud to see how far she has come.”  

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