Elizabeth's Story

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“Your daughter is about as sick as a baby can be and still be alive.” These words came only a few hours after our daughter, Elizabeth, was born. We were in shock as the neonatologist explained that if Elizabeth didn’t improve, she would have to be transferred to Children’s Healthcare of Atlanta at Egleston and placed on a life support machine called ECMO (extra corporeal membrane oxygenation). Hours later, we were on our way to Egleston, and after 10 days on ECMO and several months in the hospital, Elizabeth was finally diagnosed with a rare disease called primary pulmonary hypertension.
Before she could come home from the hospital, Elizabeth had to have a central line inserted into her heart to deliver the intravenous medication Flolan. Flolan was, and still is, delivered to Elizabeth on a continuous basis by a battery-operated medication pump that must always be connected to her. Doctors also placed a g-tube in Elizabeth’s stomach for tube feedings because she never learned how to eat. Adding to these complexities, Elizabeth required oxygen on a continuous basis through a nasal cannula. Life at home with our new baby was filled with hours of nursing services, therapy, tube feedings and doctor’s appointments. Because any interruption of Elizabeth’s Flolan infusion could be life-threatening, she could never be left in the care of anyone other than her parents or grandmother. After over a year of fighting for her life, Elizabeth began responding positively to treatment and therapy. She even became strong enough to carry her edication pump in a small backpack.
	Though we were pleased with Elizabeth’s progress with her home therapists, we thought that she would benefit from interacting with other children in a preschool setting. But so many questions made me wonder if preschool could ever be a reality.
How could Elizabeth possibly go to school? Who would carry her oxygen tank? What about her medication backpack? Tube feedings? Developmental delay? Our questions were answered when we found the Adaptive Learning Center. We were filled with new hope. A facilitator with the Adaptive Learning Center could make it possible for Elizabeth to attend a regular preschool class. Elizabeth began preschool at Northside Drive Baptist Preschool in the Fall of 2004 with a one-on-one facilitator from the Adaptive Learning Center. The entire school experience has been amazing for Elizabeth. She has been able to experience being a typical kid instead of a fragile, home-bound patient with multiple special needs. Elizabeth quickly learned the names of her teachers and classmates, participated in the school Christmas pageant and brought home mountains of artwork. Best of all, the other children in the class thought nothing of the oxygen tubing or Elizabeth’s special backpack. They just accepted her as a normal part of the class. Throughout that school year, Elizabeth improved in all areas in which she has developmental delays, and she even ate the snack sometimes! She was able to attend summer camp with the Adaptive Learning Center and she continued to excel. With her multiple medical needs, there was simply no way Elizabeth could have attended a typical preschool or summer camp without the Adaptive Learning Center. Inclusive preschool has been a fantastic experience for Elizabeth and the rest of our family. As we write this letter, Elizabeth is happily attending her new school at Peachtree Presbyterian Preschool. We are very thankful to the Adaptive Learning Center for making a dream a reality.

Pulmonary hypertension is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery rises above normal levels and may become life threatening. Pulmonary hypertension has been historically chronic with a poor survival rate. However, new treatments are available which have significantly improved prognosis. At this time there is no cure for pulmonary hypertension. For more information, please visit www.phassociation.org.