Prior to Emma's birth, Susan Henderson became an active volunteer for the March of Dimes and was elected to serve on the Oklahoma March of Dimes Board of Directors in 1994. She could never have known how personally she would be affected by the work she was already doing.
Without warning, at just under six months into her pregnancy, Susan went into preterm labor. She spent the next ten days at Integris Baptist Medical Center in Oklahoma City, lying upside down with her head suspended thirty degrees below her waist trying to delay Emma's premature birth and increase her chances of survival. At the end of those ten days, Emma was born on September 6, 1995, measuring a mere 13 inches long. She was immediately transferred to the hospital's neonatal intensive care unit (NICU), where she remained for the next 101 days as her parents watched and waited.
Emma underwent five neurosurgeries by the age of one. Doctors warned her parents repeatedly that Emma's brain might never form or grow into a healthy infant brain. They told them she was at extreme risk for blindness and deafness, and even told them at one point that she would most likely have to live her entire life in a healthcare institution.
Before leaving the NICU, laser surgery was performed on both eyes to save her eyesight. Today, Emma lives with a permanent shunt in her brain, which drains fluid from her brain into her abdominal cavity, where it can be reabsorbed. She has a diagnosis of mild cerebral palsy. Most recently, in spring 2001, Emma underwent a heel cord extension surgery to correct toe walking that is common among children with cerebral palsy. Emma's parents still worry about these and other long-term effects of being born too soon.
Medical Overview
Emma survived several complications of prematurity whose treatments were developed in part by March of Dimes-supported researchers.
- Emma was given surfactant to treat respiratory distress syndrome (RDS) because her lungs were severely underdeveloped. Surfactant is a substance the body produces to help re-inflate the lungs after each breath; premature babies are often not yet able to produce it in sufficient quantity. Treatment by giving artificial surfactant through the windpipe was developed in part with the help of the March of Dimes.
- Emma was diagnosed with persistent pulmonary hypertension (PPHN), dangerously high blood pressure in the lungs, and patent ductus arteriosus (PDA), a heart disorder. She could be treated with drugs instead of surgery, thanks to research funded by the March of Dimes.
- Bronchopulmonary dysplasia (BPD) – Emma had it as a consequence of RDS and/or the necessary treatments; the March of Dimes has funded recent research into it causes and how it might be prevented.
National Ambassador Program
Throughout the year, the National Ambassador and a parent travel across the country, sharing their story with millions of women and men. They attend events and conferences, speak to volunteers, participate in media interviews in addition to appearing with corporate leaders, celebrities and the President of the United States in an effort to raise awareness of the March of Dimes mission.
