Dianne C. Perrone is a consultant and free-lance writer with 28 years of experience and a master’s degree in advertising education. A native of Providence, R.I. she is the mother of five adult children and now lives in Hales Corners, Wisconsin.
What does a couple do when faced with information that their unborn baby has medical problems? How does a physician father reconcile his feelings of helplessness? How do parents cope with advice from well-intentioned friends and medical professionals to abort their little girl?
Richard and Lori Shamblin faced these questions in 1990. He was 35; she, 30. This third pregnancy was unplanned but joyously received. It was an exciting time for the pair and their children, Mary Catherine, then seven, and Dawson, then two.
With all the plans and preparations for an addition to the house as well as to the family, the summer seemed to fly by. However, at 20 weeks into the pregnancy, as he performed a routine sonogram, Lori’s obstetrician spoke terrifying words: “Where’s Richard [the father]? We have a problem with the baby.”
A physician in internal medicine in private practice in Tuscaloosa, Alabama, Richard forced himself to focus on the facts as he raced to the hospital: the “problem” was rare and serious, a large encephalocele [an abnormal closure of the spinal column] at the base of the baby’s brain. Although the baby’s complete prognosis could not be made until after birth, the Shamblins were told to expect motor as well as mental impairment, sight loss, seizures, hydrocephalus [a build-up of fluid on the brain], and a host of other problems.
“The nightmare every expectant mother secretly fears became my reality,” Lori recalled. Richard remembered that, “The shock of the call was nothing compared to my shock upon seeing Lori. She’s always been my ‘Rock of Gibraltar.’ Throughout the prolonged illnesses and deaths of her father, mother, and sister, she never faltered. She is the glue that holds our family together.
“Pale and shaking uncontrollably, Lori looked up at me when I walked in. Neither of us could express ourselves in words, but just being together allowed us to pool our strength. It’s a pattern we returned to again and again during the remainder of the pregnancy, at Sarah’s birth, and, in fact, throughout Sarah’s brief life.”
Like most doctors, Richard noted, he needed to feel in control of every situation. “But now, in my own family’s time of medical crisis, there was nothing I could do.”
Richard was buoyed with hope when he held his newborn daughter that mid-December day. “Her encephalocele wasn’t nearly as disfiguring as I expected – some swelling on the back of her head covered by her long black hair.”
Lori, too, focused on hope. “When I greeted her, her heart rate surged on the monitor. Unmistakably, Sarah recognized my voice and Richard’s,” she said. “Tests conducted after Sarah’s birth indicated that the part of her brain controlling hearing was not functioning correctly; thus, they concluded she could not hear. I am certain, however, that she responded to our voices and recognized them. This realization touched me deeply and has been, to me, one of the miracles of her life. Sarah responded to our touch. She knew she was loved.”
Sarah’s condition stabilized within the week. She underwent surgery to repair the protrusion and close up her skull, but Sarah died during surgery.
Richard knew many people felt they made a mistake when they didn’t abort Sarah. “They thought we were going through all this heartache for nothing. Nothing? Who can place a value on being able to hold my baby girl in my arms and tell her I love her? Who can measure the joy of feeding her with a bottle when we thought she might always be tube-fed? What is it worth? To me, it was worth everything,” Richard exclaimed.
“Despite the pain and grief of losing Sarah, we have never for one moment regretted our decision not to abort her,” Lori said. “So many wonderful things came out of the experience of carrying her for eight months and knowing and loving her for nine days. Sarah enriched our lives beyond measure, and we’re extremely thankful for her existence.”
The Shamblins decided to make Sarah’s organs available for transplant. It was a long shot; Sarah was so tiny, the probability of finding a recipient was not great. However, the call came. A critically ill baby boy in Nashville was born with a severe congenital heart defect and his only hope was a transplant. “For the first time in days,” Lori remembered, “we rejoiced again because Sarah’s death was not to be the end.”
“Even in my continuing grief, I am at peace,” Richard now states. “Sarah touched so many people, clearly demonstrating that no matter how ‘handicapped’ she was, her life had inestimable worth just by being who she was. We’ll eventually spend eternity together, but even now I am thankful she is still alive, not only in our memories, but also in a little boy somewhere in Tennessee.”
“It is our hope that Sarah’s life and our experience can encourage other parents faced with difficult pregnancies,” reflected Richard. “Surely this world is a better place for Sarah having lived in it.”