Bryce: Born Too Soon
One in eight babies born in the United States is delivered prematurely, according to the March of Dimes. Premature infants are at high risk for developing a series of costly, life-threatening complications that can include respiratory distress syndrome, bronchopulmonary dysplasia, retinopathy of prematurity, intraventricular hemorrhage and necrotizing enterocolitis.
Bryce developed the last of these, with a long list of associated complications.
Born on Dec. 20, 2004, at Memorial Hermann The Woodlands, Bryce came into the world at 29 weeks, weighing 3 pounds, 11 ounces. He spent the next five months in the hospital’s Neonatal Intensive Care Unit fighting for his life.
“Bryce was little but healthy,” said his mother Heather, who attributes the premature delivery to her preeclampsia and kidney disease. “Then exactly a month later, on Jan. 20, we got a call from the hospital around midnight saying that he was sick, and they were running tests. The next day we got the diagnosis of necrotizing enterocolitis.”
In babies born prematurely, necrotizing enterocolitis may have various causes, including incomplete development of the intestines and lowered immunity. “Adequate nutrition becomes a primary concern with premature infants, said Richard Rivas, M.D., the neonatologist on staff at Memorial Hermann The Woodlands who coordinated Bryce’s care.
“Tube feeding is standard of care, but some babies don’t tolerate it well and develop necrotizing enterocolitis,” Rivas continued. “Treatment varies, depending on the severity of the condition. Sometimes we can stop feeding for a couple of days, then restart it. Sometimes portions of the intestine die and have to be removed.”
When Bryce developed necrotizing enterocolitis, Rivas consulted with physicians on staff at Children’s Memorial Hermann Hospital, including pediatric surgeons Allen Milewicz, M.D., and Robert Bloss, M.D., and pediatric gastroenterologist and transplant hepatologist Ruben Quiros, M.D.
“We were in contact with the infectious disease specialists as well, for advice on which antibiotics to use and how long to use them,” Rivas said. “We also talked with the neonatologists at Children’s Memorial Hermann about transferring Bryce to the (Texas) Medical Center. But after reviewing his condition and consulting with his parents, we decided to bring the resources of Children’s Memorial Hermann to The Woodlands. Bryce was just too sick to tolerate a move.”
In two surgeries at Memorial Hermann The Woodlands, Milewicz and Bloss removed about 40 percent of Bryce’s small bowel, as well as the ileocecal valve connecting the two bowels and a portion of the large bowel.
“The next day, the doctors told us that Bryce wasn’t doing any better,” Heather said. “He had swelling and pneumonia, and his heart wasn’t pumping enough blood. They said he had a bed waiting at Children’s Memorial Hermann where they could put him on a heart-lung machine.” Extracorporeal membrane oxygenation (ECMO), uses a heart-lung machine to provide partial cardiopulmonary bypass, allowing the heart and lungs to rest and heal. Because of the critical nature of the procedure, patients on ECMO support tend to have high complication rates.
“When the doctors told us about possible effects of the machine, Jim and I just looked at each other and said no,” Heather continues. “I think that was the single hardest decision that we have ever had to make.”
Bryce went back to surgery for a second time on Jan. 26. The presence of gangrene necessitated removal of five and a half more inches of bowel, which left Bryce with only 65 centimeters of small intestine and a temporary ostomy. In a third 3½-hour surgery on April 17, the surgeons repaired the ostomy, leaving Bryce with a functioning bowel.
But the surgeries also left Bryce with short bowel syndrome, a gastrointestinal tract with inadequate absorptive area to provide the nutritional, fluid and electrolyte requirements for sustaining life. To ensure proper nutrition, he was put on total parenteral nutrition (TPN), a combination of carbohydrates, proteins, lipids, sugar, electrolytes and trace minerals given through an intravenous drip. About 60 to 80 percent of patients on TPN tolerate it well; the remainder have complications that can include liver disease.
Because of the danger of liver disease resulting from TPN, Rivas consulted with pediatric gastroenterologist Ruben Quiros early during Bryce’s care. “Thirty years ago, before we had TPN, babies like Bryce died. Dr. Rivas and I co-managed the TPN, and I also gave him advice on how to advance nutrition through a feeding tube. Initially, we gave Bryce a slow drip with tube feeding because he couldn’t tolerate food by mouth completely. Finally, we were able to wean him off TPN in March 2005.”
After nearly 3½ months on TPN Bryce developed cholestasis, a condition in which the flow of bile from the liver is blocked. “A liver biopsy showed significant scarring at only three months of age,” said Quiros, who is an associate professor of pediatrics at The University of Texas Medical School at Houston. “We were very concerned, because the scarring indicated that his disease was progressing.”
Bryce was given medication to treat the cholestasis. At the same time, Rivas and Quiros began to move him toward more normal feedings. Once he was weaned from TPN, he was fed through a nasogastric tube using a 24-hour drip. Within about a month, by June 2005, he was started on bottle feeding.
“He was able to take three bottles but still needed a drip of 18 hours a day,” Quiros said. “By July he was drinking enough by mouth that we were able to stop the tube feeding. He was nearly 7 months old. That kind of progress is really amazing for a baby who underwent a major resection.
“When he came out of the NICU (neonatal intensive care unit) at The Woodlands, he was just off TPN and we still needed to work on the issues related to short bowel syndrome, feeding intolerance, diarrhea and liver disease. He remained on his liver medication until September, when I saw him again. He was doing remarkably well, and by December, we stopped seeing him as frequently.”
By the end of 2005, Bryce’s liver count was normal. “Today, the difference in Bryce is very striking, especially after all he’s been through,” Quiros added. “He looks like a normal 2-year-old in every respect. For a little guy who started below the third percentile in weight and around the 25th percentile in length, he’s doing great. He’s really moved up quickly on the curve.”
“Bryce is so smart and happy. It’s wonderful,” Heather said. “He’s at the 50th percentile in his growth now, so he’s right about average with the kids in his class.”
His parents weathered the experience well, too. Adjustment to a baby’s premature birth can be very difficult for parents, and despite every attempt on the part of caregivers to aid the parent-child bonding process, the high-tech NICU setting can interfere as parents transition into parental roles. Add to that an often-long list of complications to deal with and the difficult decisions parents have to make.
“Having a child in the NICU is very hard on the family,” Rivas said. “The families who deliver at Memorial Hermann The Woodlands live in the vicinity. If the child is able to be cared for nearby, they can visit often, without the inconvenience of driving to the (Texas) Medical Center. They can begin to really develop a relationship with their child while he’s still in the NICU.”
“It was truly a blessing to have access to the care we had at Memorial Hermann The Woodlands,” Heather said. “The nursing staff knew both my husband and I worked full time so they gave him extra attention. I can’t say enough about the nurses and doctors who cared for Bryce. They were honest with us. They were wonderful.
“We live three blocks away from the hospital. Because we were so close, I could see Bryce three times a day. If he had had to be treated at the (Texas) Medical Center, we wouldn’t have had the opportunity to spend as much time with him. The willingness of the medical center doctors to come to The Woodlands meant so much to us. He got highly specialized care, and we were able to be there to give him the love and attention he needed to get well.”