Family Spends 193 Days in Arkansas Children’s NICU Saving Son from NEC

While 1-year-old Sebastian and Sofia Ball are twins, their personalities are a bit like sugar and spice.

“Honestly, we call Sofia gremlin often because she’s always up to something. I describe Sebastian as silly and so sweet, and so loving. Very smiley,” mom Brittany Oviedo said of her children, with dad Casey Ball adding, “They are incredible on their own, whether it be their personalities or just the fact that they’re our first children. They are just rays of sunshine every day.”

However, what the siblings will always have in common is their resilience. First-time parents Oviedo and Ball of Conway welcomed their twins on June 6, 2023, born prematurely during an emergency C-section at the University of Arkansas for Medical Sciences (UAMS) in Little Rock. Their original due date was in August.

Their lives were at risk from the moment they were born, particularly Sebastian’s. They were soon transferred to Arkansas Children’s Hospital (ACH) Neonatal Intensive Care Unit (NICU) in Little Rock, the only Level Four NICU in the state. Sebastian was diagnosed with necrotizing enterocolitis (NEC), a life-threatening disease impacting the intestines of premature infants.

He spent over six months in the ACH NICU, cared for 24/7 by a medical team, and was discharged Dec. 16.

“After 193 days and everything we went through, the entire staff became family to us. ... We didn’t think there would be a point to be happy going in there, but they made it that way. They laughed with us and joked with us. They held us when we cried. They went above and beyond in every single way for us,” Oviedo said.

Understanding NEC

At 30 weeks and five days, Oviedo began experiencing high blood pressure and was diagnosed with gestational hypertension, and then pre-eclampsia. At 31 weeks, her water broke, and she was transferred to UAMS to try and stop the labor. The next day, she gave birth to the twins.

"I labored and delivered within an hour. It was totally terrifying,” Ovideo said, adding that she wound up having an emergency C-section after Sofia was up near her ribs and Sebastian was “stuck in the birth canal. They had to be maneuvered out the ‘sunroof.’”

Sebastian was 3 lbs., 4 oz., and Sofia was 3 lbs., 8 oz.

Sebastian was transferred from the UAMS NICU to the ACH NICU June 16 for vomiting feces, stomach distension and respiratory distress, with suspected NEC. Sofia transferred at the end of June, so both could be in the same NICU.

“She was a pretty typical case,” her mom explained, and Sofia was discharged July 25. However, during an appointment a few weeks later at the ACH High-Risk Newborn Follow-Up Clinic with Nurse Practitioner Monica Alexander, they detected a heart murmur and two small brain bleeds, a common occurrence in premature infants. Sofia was seen by neurology and cardiology and diagnosed with atrial septal defect ASD. This congenital heart defect will require monitoring by the ACH cardiology team.

But it was Sebastian’s health that turned much more dire.

“He had IV fluids, a big course of antibiotics, X-rays every 24 hours,” Oviedo said.

Rachel DeLong, M.D., a pediatrician at the ACH NICU and assistant professor of pediatrics at UAMS, was a part of Sebastian’s care team from the moment he arrived. Under one of the neonatologists, DeLong works on a special team dedicated to long-term babies in the NICU with gastrointestinal and lung issues.

“The biggest risk factors for NEC are being born early and small. The earlier and smaller you’re born, the more risk you’re at. It is not an uncommon diagnosis, and it brings a lot of babies across the state to our unit to be evaluated by surgeons,” DeLong said, estimating at least 10 percent of babies in the ACH NICU have suffered from NEC.

A baby’s gut has good and bad bacteria, but it impacts proper gut development when born prematurely.

“The bad bacteria kind of gets the upper hand, and we start seeing an infectious picture. So, it is the actual wall of the bowel that gets sick. One of the things we look for on an X-ray is air within there because the bacteria produce air with their metabolic processes. That puts kiddos at risk for their bowel perforating, leading to the need for abdominal surgery to open them up and take out the sick part, which is what happened with Sebastian,” DeLong said. “Untreated NEC invariably ends in death.”

Saving Sebastian

DeLong said within 24 hours, Sebastian’s condition worsened, resulting in emergency surgery Aug. 1. NICU Nurse Abigail Graham was the first to spot a change in his condition.

“He just seemed really uncomfortable,” Graham said after giving him his pacifier and trying to comfort him. When she unwrapped him from his blanket, “I saw that his belly was distended around his belly button. It was really discolored. I listened to his bowel sounds, and he really didn’t have any.”

She quickly called DeLong, which led to more X-rays, bloodwork and respiratory support. Even though there was no conclusive evidence for NEC on the X-rays, the NICU care team took immediate action.

Surgeons Lindsey Wolf, M.D., and Martha Conley, M.D., performed an emergency laparotomy, which means opening the abdomen at the bedside in the NICU, lasting about four and a half hours. He was officially diagnosed with NEC.

“When they opened him up, he had a lot of adhesions, which is basically scar tissue that the body makes in reaction to infection. They had to dissect really carefully. The portion of bowel they found was perforated, and it was kind of walled off. The body tries to put things away that aren’t good for it. But for whatever reason, we kind of reached our critical point. So that portion had to come out,” DeLong said.

In Sebastian’s case, they could not immediately reattach them because the bowels were so inflamed. Surgeons performed a diverting ostomy, with two portions of his small intestines sticking up outside of his body. On Oct. 31, he underwent reanastomosis to surgically reconnect his bowels back in his body.

“He had to have a quarter of his small intestines removed due to necrosis and several perforations. His intestines were completely matted together with scar tissue. None of this could be seen on his X-rays,” Oviedo said. “It was honestly one of the most terrifying days of our lives. Thank God they followed their guts because NEC can take babies quickly. I was so grateful. He would definitely not be here today if they had not gone in when they did.”

NICU Life

Following emergency surgery, Sebastian’s journey in the NICU was just beginning.

As weeks in the NICU turned into months, the family felt support every step of the way. Oviedo said the love for their family and son was felt by every care team member, from the NICU receptionists, his around-the-clock nurses and his extensive team of medical experts, about eight to 10 who would round at Sebastian’s bedside four times a day.

“When we first got to Arkansas Children’s, I was overwhelmed and scared. I didn’t know up from down; I hadn’t processed that I had these babies, and they were out in the world subjected to all of the scary stuff that was happening. They were not hesitant at all to take care of me,” Oviedo said. “The nurses we had; I cannot speak enough praise about these nurses. They rallied for him and advocated for Sebastian every step of the way.”

DeLong said the medical team forms a bond with families, celebrating and supporting them, particularly babies in the NICU for long stretches.

“When I first saw Sebastian, he was still in a box and in his isolette, not big enough to regulate his own temperature. And before he left, he was sitting up in a highchair babbling, just hitting all those milestones you get to see every day. We get to share in the triumphs, the excitement. I remember calling Brittany after Sebastian had his first poop after we put him back together. I don’t think I’ve been as excited about a dirty diaper as that,” DeLong said. “But also sharing the difficult times. The day Sebastian had to have his surgery, Sophia was there. She’d been discharged, but we kind of took turns looking after her and looking after the parents. We all, in a way, become a family.”

For 193 days, Sebastian’s parents made the roughly hour-and-a-half roundtrip drive twice daily from Conway to Little Rock, with Sofia in tow. But even when they weren’t with Sebastian, they knew he was in the best care.

“He’d sit up at the end of his pod and chat his little heart out to anybody who would pass by. The nurses would read to him daily. They snuggled him on late nights,” Oviedo said. “We could watch on the AngelEye camera when we couldn’t be there late at night, and he was always in somebody’s arms, soothing and cuddling him."

Going into the NICU as new parents was overwhelming; however, from that first day, the entire care team made it their mission to care for their family.

“It began to feel almost like a second home,” Ball said.

The family celebrated the small victories and holidays, including 10 days of Halloween, by dressing the twins in various costumes. For one day, they dressed up as their “personal superheroes” — Sofia dressed as a NICU nurse, and Sebastian dressed like neonatologist Ashley Ross, M.D.

On Dec. 6, they also celebrated the twins’ “half-birthday,” bringing in cupcakes with little faces of the twins on each and snacks for the staff.

“We didn’t know if there was going to be six months for Sebastian,” Oviedo said through tears. “I wanted to make it a big hoopla because I’m just so amazed that we were coming down on the other side of this. And the staff deserves it, and these babies deserve to be celebrated.”

Sebastian’s parents credit Graham and the entire NICU team for saving his life.

“It’s very humbling to have families attribute (that to you) because I’m just going and doing my job,” Graham said.

A Future Together

Since his December discharge, Sebastian has continued his care with Arkansas Children’s with the gastrointestinal care team. DeLong said it was a positive sign Sebastian could have “full feeds” again. He will have regular appointments with GI specialists at ACH.

“Just like when he was inpatient, as an outpatient, we are going to pay a lot of attention to his poop. Just making sure that nutritionally his bowel is able to absorb all the nutrition it needs, even missing some parts, and that he’s growing,” she said.

Like all children who spend time in the NICU, the twins are remembered fondly by their care team.

“When kiddos are in our NICU that long when they get discharged, it’s definitely a bittersweet type of thing. I’m so thrilled that Sebastian got to go home and be with Sophia in time for Christmas with the whole family,” DeLong said. “But I will not lie to you — there were several weeks where I would walk by where his bed space was and look for him because I’d always pop by and say, ‘Hi.’ That was like, oh, I miss him.’”

Today, Sophia and Sebastian continue settling into their home with their parents and dogs, Dallas and Suede, watching over them.

“It has been so rewarding to be able to come out on the other side of this knowing that I’m able to have my family together, and it’s because of the work done at Arkansas Children’s,” Ball said through tears. “If I could say anything to Arkansas Children’s and the staff that is here, thank you so much. You gave me my son.”

This article was written by the Arkansas Children’s content team and medically reviewed by Rachel DeLong, M.D.