In February 1995, Kristy had been with our family only 8 weeks when my husband announced he was leaving. My son was soon off to college, and I was working as an Air Force flight nurse with the Tennessee National Guard and teaching at Tennessee State University. When I picked Kristy up from day care that afternoon, I wondered how I would manage to care for her alone. As if reading my mind, Kristy began laughing, then extended her arms and with her eyes seemed to say, "Keep me!!"
That afternoon I made her a promise that we'd stick together, and I'm glad I've been able to honor that promise. Kristy is a blessing. She's added to my life in countless ways. I love her dearly and am amazed at God's hand in our lives. Our story is as follows.
I loved my son but wanted a little girl. I had prayed for another child since my son was young. My prayers seemed to go unanswered. After 14 years of prayer, Kristy came to me. She was 4 months old when we brought her home on December 30, 1994. Immediately, and throughout the years, it became evident why I had needed to wait. Those long years of deep desire were preparing me for Kristy because I would need stored-up love to care for her.
During the ensuing months, Kristy was diagnosed with FAS. Kristy's infant appearance resembled the pictures in my nursing assessment text illustrating the faces of children with FAS. Kristy would soon experience the full-blown, major effects of FAS. These effects include growth retardation, facial dysmorphology, and neurodevelopmental defects. Kristy had other problems associated with FAS including cardiac septal defects, strabismus, hearing deficits, and hemangiomas. Kristy has suffered greatly as a result of FAS. Sadly, all her suffering could have been prevented.
At 5 weeks, Kristy was found to have congestive heart failure. She also had a ventriculoseptal defect (VSD). She underwent surgery for the VSD repair and was in the neonatal intensive care unit (NICU) at Vanderbilt during her early weeks of life. She was placed in state custody after her release from Vanderbilt showing a common factor associated with FAS. Research shows that almost one-third of children with FAS are raised by parents other than their birth parents. Kristy came to me with an apnea monitor and needing Lanoxin. It seemed as if we had an ICU in my home. Kristy was sick most of the time, and I slept fewer than 5 hours per night for 4 years.
Kristy's problems began to manifest themselves as the weeks, months, and years passed. She was a medically fragile child who often had severe respiratory distress and required inhalation treatments and frequent corticosteroid treatment because of reactive airway disease.
Kristy suffered growth retardation. She weighed only 11 pounds at 4 months. She's been on nutritional supplements throughout the 12 years she's been with me. Brain damage from exposure to alcohol in utero left Kristy, like many children afflicted with FAS, disabled. Kristy began leg scissoring movements early and was diagnosed with cerebral palsy. Kristy's pediatric neurologist described her brain structures viewed on the MRI as "thin." When she was 2 years old, it was reported that Kristy's corpus callosum was missing. According to the prognosis, Kristy would require help with all activities of daily living for her entire life.
The impact of FAS for Kristy has been cumulative and devastating. She's endured 13 surgical procedures, many for correction of severe scoliosis. She wears a back brace and orthotics. A wheelchair and walker provide Kristy some mobility, and she sleeps in a special hospital bed to protect her from falls.
Kristy is just one child with FAS. The impact of Kristy's FAS includes, but is not limited to, open heart surgery, chronic lung problems, and frequent exacerbations of asthma with upper respiratory infections, poor endurance, brain damage, cerebral palsy with handicapping conditions, and many surgeries. The lifetime costs of FAS are estimated to be 5 million dollars per child. The costs in terms of human suffering and the lifetime impact on quality of life are inestimable.
In sharing Kristy's story, it is my hope that nurses reading this account will have an increased awareness of FAS and the importance of teaching prevention. Fetal alcohol syndrome is preventable. Let's work together to eradicate this disease.