“We virtually lived at Children’s Memorial Hermann Hospital in 2005,” says Yvan’s mother, Arlene, who celebrated birthdays and holidays, ran her day spa and yoga studio business and exchanged marriage vows with her husband at the hospital that year. “When you have a child with serious health problems, you learn to adjust your life to accommodate it.”
Born prematurely at Memorial Hermann The Woodlands Hospital in June 2003, Yvan weighed just 2 pounds, 3 ounces. His mother still has the Beanie Baby that was bigger than he was. “We spent five weeks in the hospital’s Neonatal Intensive Care Unit,” recalls Arlene. “When his weight increased to 5 pounds, we were finally able to go home.”
Like many premature infants, Yvan had persistent respiratory and gastrointestinal reflux problems. The following April, when he was almost a year old, he was diagnosed with pneumonia by pediatric pulmonologist Giuseppe Colasurdo, M.D., professor and chair of the Department of Pediatrics and H. Wayne Hightower Distinguished Professor in the Medical Sciences, who is now dean of The University of Texas Medical School at Houston. Yvan was admitted to Children’s Memorial Hermann Hospital for three days of care.
“That episode was minor in comparison with what happened to us the following year,” Arlene says. “Our really trying times started in January of 2005, when Yvan was breathing very quickly. I could feel and hear the crackling from the back to the front of his chest.”
During the ensuing 29-day hospital stay, Yvan was diagnosed with a rare and life-threatening form of chronic obstructive lung disease called bronchiolitis obliterans, in which the small airways of lungs are inflamed to the point that they are obstructed by tissue. He was treated by Dr. Colasurdo and pediatric pulmonologists Cindy Jon, M.D., and Keely Smith, M.D., who are both assistant professors of pediatrics at the UT Medical School.
“Yvan’s list of health problems kept getting longer,” Arlene says. “He had premature lungs, gastrointestinal reflux disease (GERD), a tendency to get pneumonia and now the diagnosis of bronchiolitis obliterans. That same year, he had acute maxillary sinusitis and an adenovirus that affected his respiratory tract and brought on a high fever. We spent more than 80 days at Children’s Memorial Hermann Hospital in 2005. We literally lived in and out of the hospital or quarantined to the house by doctor’s orders.”
In February, Kevin Lally, M.D., professor and chair of the Department of Pediatric Surgery at the UT Medical School, performed a Nissen fundoplication, a surgical procedure commonly used to treat GERD. In the procedure, the upper part of the stomach is wrapped around the esophagus and stitched into place to reinforce the closing function of the lower esophageal sphincter. Dr. Lally also implanted a device to deliver medication and a gastric feeding tube to ensure that Yvan received adequate nutrition.
Today, Yvan makes regular visits to Dr. Colasurdo’s group at UT Physicians. His reflux is controlled by medication, and his lung capacity has improved. “We still have health issues,” Arlene says. “We can’t keep his weight steady, so he gets a controlled intake of 1,300 calories a day delivered by the feeding tube while he sleeps. If he gets sick with a borderline cold or flu, we have to stop the tube feeds and use an inhaler and medication to prevent asthma attacks.”
Arlene and her family pay regular visits to the staff at Children’s Memorial Hermann Hospital. “We owe our son’s life to them many times over,” she says. “We are so thankful for the pulmonary group at UT Physicians, and also for the Child Life specialists at Children’s Memorial Hermann. We can’t even begin to list the names of all the people who helped us through this. We would never go to any other hospital.
“Yvan is awesome,” she says. “He has a spirit that’s incredible. We long ago decided we were not going to enable him. We’re going to help him thrive, and that’s what we’re doing. You live no matter what cards you’ve been dealt and keep the faith.”