Zoe: Learning How to Thrive
Sheryl has four children who all suffer from the same genetic disease: gastroparesis, also called delayed gastric emptying (DGE). Babies with DGE tend to get full quickly and may have nausea, vomiting or abdominal bloating after meals. “When my children were born, each of them had chronic projectile vomiting after eating,” she says. “Any food that went into the stomach came right back out again.”
By the time her youngest child was born in March 2005, Sheryl was intimately familiar with the symptoms of DGE and the treatment Zoe would undergo. Shortly after her birth, she was fitted with a gastric feeding tube (G-tube) inserted into her stomach through a small incision in the abdomen.
“If you find the right doctor, have patience and get your child on the right diet, delayed gastric emptying will resolve itself gradually over time,” Sheryl says. “It’s a matter of getting the right nutrition without overloading the stomach. My first three kids had the feeding tube out by the time they were five.”
But Zoe was small compared to Sheryl’s other children and continued to have health problems. “She was always fatigued, and it was hard to put weight on her. She had almost no energy at all.”
By 2008, she was also snoring loudly during the night. “Sometimes I’d hear her gasp, stop breathing and then start snoring again,” Sheryl says. “She was not thriving. In fact, it seemed like she was dropping weight every other day. I was so worried about her that I started sleeping next to her at night.”
Zoe’s pediatrician recommended a sleep study and referred her to Cindy Jon, M.D., a pediatric pulmonologist affiliated with Children’s Memorial Hermann Hospital and an assistant professor of pediatrics at The University of Texas Medical School at Houston.
“By the time we saw Dr. Jon, Zoe was a boney, walking ghost child,” Sheryl says. “She walked into the exam room, took one look at Zoe and said, ‘I know what’s wrong with your daughter. She has sleep apnea.’ I had begun the suspect the same thing.”
Obstructive sleep apnea (OSA) is the most common organic cause of daytime fatigue in adults and children. OSA can be mild, moderate or severe based on the number of times an hour a child stops breathing, which can range from five to 50 times in a 60-minute period. The most obvious symptoms of sleep apnea in children mimic the disorder in adults: loud snoring and sudden snorting during sleep. But in children the disorder may also present as inattention, difficulty concentrating in school and hyperactivity.
Within days, Zoe was in a sleep study at the hospital’s Sleep Disorders Center. Approximately 50 percent of the sleep studies done at the center are pediatric, representing an average of about 50 children tested each month.
“It’s important to choose a sleep lab equipped to make special accommodations for children,” Dr. Jon says. “The criteria we use to analyze and score children’s sleep studies are different than the criteria used for adults. If you don’t use the correct criteria, it’s easy to miss sleep apnea in a child. You also need professional staff who are familiar with kids, experienced in working with them and able to allay fears and make the children comfortable with all the belts, wires and detectors required for a sleep study.”
“When we learned the results of the study, we were horrified,” Sheryl says. “Zoe had an 87 percent blockage of her airway while she was sleeping. She was small and underweight because she simply wasn’t getting the rest she needed to grow.”
Dr. Jon referred Zoe to Brian Wang, M.D., an otolaryngologist affiliated with Children’s Memorial Hermann. A tonsillectomy/adenoidectomy was scheduled for mid-October.
Within three months following her surgery, Zoe had gained eight pounds. “If your child has obstructive sleep apnea, you know it’s affecting something but you don’t know the extent of the damage it’s doing until the obstruction is removed,” Sheryl says. “She still needs to gain weight and still gets tired, but now that she can breathe and is getting the right nutrition, she’s like a new child. We are so grateful to Dr. Jon and Dr. Wang, and to Dr. Jon’s dietitian Sara Gonzales, who helped me get Zoe the higher strength formula and supplements she needs to thrive.
“Dr. Jon is awesome,” she adds. “Sometimes you meet doctors, and you can tell they’re burned out. She is not. She’s energetic and caring. All my kids love her. Without Dr. Jon, I don’t know if she would still be here.”