1 of 2
Dr. Tiffany Orndorff with daughter Ella Photo by Jay Paul
2 of 2
Clockwise, from top left: Dr. Tiffany Orndorff with her husband, Steve Meadows and children Brendan, 11; Ella, 8 months; Lila, 7; and Georgia, 10 Photo by Jay Paul
Dr. Tiffany Orndorff was in her final month of pregnancy, in May 2012, when she received her first hint that something wasn't right. Routine exams showed that the baby girl she was carrying was about two-and-a-half weeks behind in size.
"The thought was, maybe my placenta wasn't feeding her as well as it should have," says Orndorff, who works with Midlothian Family Practice. She went to a perinatologist for in-depth ultrasounds to see if she might need to have an early delivery.
The ultrasound technician didn't say much, but before leaving to get the doctor, she commented, "Man, she's a tough little girl." That raised an alarm in Orndorff's mind: "I thought, ‘Wait a minute. What's going on here?' "
The doctor redid the scans and told her that it appeared that the baby had a large cyst in the back of her brain, or it could be that the back part of the brain, the cerebellum, had not developed.
"I had to face the fact that I had a baby who had a large cyst or part of her brain missing," Orndorff says. "It was a shock. Even knowing what you know as a medical person, it was just unreal." The next day, a pediatric cardiologist conducted an echocardiogram, a test that uses sound waves to create a moving picture of the heart. Orndorff says it showed a hole in the heart and abnormal-looking valves. "Her aorta was overriding to the right side instead of the left." When she also saw a second perinatologist a week later, he told her the child might have Trisomy 18, a genetic disorder in which someone has three copies, rather than two, of material from the 18th chromosome. He said it was likely that the baby would not survive. Despite that devastating news, Orndorff says it was a relief to hear the worst-case scenario. "I told my husband that I felt more calm," she says. "I felt kind of settled." At some appointments, she had felt like the medical team might be holding something back. "They didn't know or weren't certain, so they'd tell you the best thing that could happen," she says. "For me, that kind of left a lot of worry and anxiety." Before Orndorff went to Johnston-Willis Hospital for induced labor on June 25, 2012, she packed up everything in the nursery — all the baby shower gifts — and put them in plastic storage totes. She told her husband, "If she doesn't make it, this is what I want for funeral arrangements. I want all those boxes gone. I don't want them there when I get home." At the hospital, a cardiologist and neonatal specialists were on hand, but Orndorff's obstetrician told the nurses to be prepared for the likelihood that the baby would die. Still, her heart rate remained strong, and when Ella Corrine Meadows was born via Cesarean section at 12:03 a.m. on June 26, she attempted to breathe. "They put her on a ventilator and took her to the ICU and within the hour, a heart doctor had done an ultrasound," Orndorff says. Despite its abnormal anatomy, Ella's heart was pumping blood and sending oxygen to her body. After eight hours, the 5-pound, 11-ounce girl was off the ventilator, and within 24 hours, she could breathe without oxygen being administered. An MRI showed that what had appeared in the prenatal ultrasound to be a large cyst was actually a small cyst, though a middle portion of the brain that allows communication between the right side and the left was also affected. Genetic testing later confirmed Trisomy 18, which affects development. According to the National Institutes of Health, half of infants with the condition do not live more than a week. Yet after seven days in the hospital, nurses in the NICU showed Orndorff how to change Ella's feeding tube, saying there was no reason she couldn't be cared for at home. As a result of low muscle tone, Orndorff says, her daughter can't sit up on her own and has little control of her neck muscles. She's on oxygen at times because of trouble with reflux. She continues to use a feeding tube, though her parents sometimes are able to get her to swallow a little milk or food. Just a couple of days after her daughter's 8-month birthday, Orndorff marvels about the progress she's made: She smiles at her parents, she reaches for toys, enjoys being read to by her siblings and she can partially roll over. Seeing things from a patient's perspective, Orndorff says — waiting for results and trying to juggle work and appointments — "has changed my practice forever." It makes her more understanding if patients are late, she adds, or if they bring up something other than the stated purpose for their visit. Based on her own experience, she also realizes that patients often want to hear what she really thinks about a diagnosis, even if the news is bad. On the other hand, Orndorff says, "I've learned that medicine is not as certain as we think it is. I think that's one thing that Ella taught me. According to medicine, there's no reason her heart should work as well as it does. There's no reason she should be here."