written by: Susan Lacke photos by: Adam Finkle
The smallest fighters beat the biggest odds.
Peyton’s Story: DEFYING THE ODDS
It was Father’s Day in 2007, and Tracy Smith had figured out the perfect present for her husband, Travis: the first view of their first baby. Tracy, 30 weeks pregnant, scheduled an elective 3D ultrasound, and the Smiths excitedly giggled as the technician squeezed cold gel on Tracy’s belly to begin the procedure.
But something was off. The technician couldn’t say what, exactly, it was—only that they needed to return to their obstetrician immediately. It was there they were told abnormalities had been identified in the measurements of the face and arms. The umbilical cord was also wrapped around the baby’s neck multiple times. More tests were needed, but the doctor was clear: Tracy Smith’s pregnancy was a perilous one.
“They realized that her lower jaw was so small that she was having difficulty breathing,” recalls Tracy. “They tried multiple times to get an airway and were unsuccessful, so she was transferred to a different hospital via ambulance.” Tracy, recovering from her cesarean section, was forced to stay behind while Travis attended to the care of their newborn.
The doctors stabilized Peyton’s breathing, then took stock of other abnormalities—in addition to her small lower jaw, Peyton had fused bones at the elbow, shortened forearms and overlapping toes. Peyton was diagnosed with Nager Syndrome, a rare condition which causes facial deformities and issues with extremities.
But what happens when things don’t go according to plan? Each year, 10 to 15 percent of babies born in the United States (roughly half a million) are admitted to a neonatal intensive care unit, or NICU. Most are premature (born before 37 weeks of pregnancy) or have a medical condition that requires special care.
In Utah, approximately 5,000 families each year don’t get to carry out their perfect plans for a perfect birth experience. What they get instead, they say, are tiny miracles. These are their stories.
“One of the worst memories I have is that discussion with the geneticist,” Tracy shudders. “They pulled out a thick genetics book and showed a stark black and white photo of a child with their eyes blocked by a black box and told me that is what my daughter had. He said there aren’t many [with Nager Syndrome] who survive past infancy. The ones who do were historically institutionalized.” Tracy and Travis couldn’t reconcile the disturbing image with their baby lying in the NICU.
“We felt completely overwhelmed,” says Tracy. “We were barely managing the basics— breathing, eating, growing.” The Smiths were thankful they didn’t have to deal with insurance companies, as Tracy’s job came with a generous health insurance plan. Before Peyton was released from the hospital, her medical bills exceeded one million dollars; more was to come.
In the first year, more complications of manifested: Peyton needed a tracheostomy (an incision in the windpipe) to breathe and a gastrostomy (an opening in the abdomen) to receive nutrition. In addition, she had hearing loss, allergies, asthma and a heart condition. Her treatment was medically complex with many surgeries, hospitalizations, doctor’s appointments and specialists at Shriner’s Hospital in Salt Lake City.
Because so little was known about her syndrome, expectations for Peyton’s development were low. Still, the Smiths began work with an occupational therapist. Everyone, including the therapist, was surprised when Peyton rolled over on her own. Then she was able to sit up, another unexpected milestone. Then her development stalled; the therapist said it was likely Peyton wouldn’t learn how to crawl, as her arms were simply too short.
Then, she walked. At 16 months old, Peyton defied expectations by skipping the crawling stage altogether and going straight to walking. The therapist was stunned.
“He told me that when he visited her the first time, at just a few months old, he never thought she would walk, but he also never shared that with us. He was amazed at how far she had come,” Tracy smiles. “It was a great example to us going forward that we weren’t going to limit her by what we think we should expect from her.”
Ten years later, Peyton is a bright, bubbly child who continues to defy expectations on a daily basis. On a recent summer day, Peyton represented Shriner’s Hospital as a Patient Ambassador, speaking to a group of more than 500 donors at an annual fundraiser.
Tracy and Travis serve as ambassadors, too. As a result of the difficulty of those early years with Peyton, the Smiths participate in a multi-state postgraduate program for clinicians working with children who have special healthcare needs. “We tell them what it is like to be a family in these situations. I tell our story to future geneticists, so hopefully other families in the future will have different experiences than we did. Although children with Nager Syndrome have challenges, there is so much hope for their future.”
See more inside our 2017 November/December Issue.