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A VERY SPECIAL NEWBORN

a foreword by

Barbara Wolk Stechenberg, MD 

Twenty-two years ago when Sarah Blomstedt, first called simply Baby LaScala, unexpectedly decided to make her appearance in the world, babies of her size and prematurity faced a grim forty percent survival rate.  Those who did survive often experienced long-term problems related to their early births. Even now, with advances made in the care of premature babies, infants the size Sarah was at birth have a mortality rate of twenty percent. They can still have many potential long-term problems.

When Sarah was born, neonatology itself was in its infancy. Many neonatal intensive care units were only ten or so years old. Today, the world of neonatology changes constantly. Pediatric residents, physicians learning to become pediatricians, joke about returning to the NICU after a six-month hiatus and finding that everything has changed. The field evolves that quickly.

Despite new technology with its tubes, special intravenous feeding, and other bells and whistles, there are still many risks faced by premature babies. The most common of these risks is infection. Very small premature infants have under-developed immune systems. Most importantly, they lack the natural barrier of the thicker skin that full-term infants have to help fight off infections. This makes them even more vulnerable to infection from germs that normally just stay on the surface of the skin.

One invasive germ causes yeast infections. When Sarah developed her yeast infection, there were only a few reports from other medical centers about his special problem. To have a yeast infection clog up both kidneys and prevent the normal escape route for urine to rid the body of wastes was (and is) extremely rare. To add irony, her father is a kidney doctor.

All of us--medical personnel and Sarah’s family—felt as though we were making it up as we went along as we figured out what to do to encourage Sarah to survive. We were so fortunate to have a team of nurses, doctors, and parents who were willing to try anything for Sarah.
But what about Sarah? It is hard to convey how very special she was. After reading the draft of Susan’s book, I was in the NICU seeing another infant and ran into David, Sarah’s primary care nurse so many years ago. I had only to mention one word about this book and he immediately remembered Sarah, her family, and her stay in the unit. I asked him how, after taking care of hundreds of premature infants in the intervening twenty years, he could remember her vividly. He shrugged in his humble way—she was different. So feisty! So bursting with life! She had been as cute as the button-like hemangioma on her forehead.

Sarah’s dad, Jeff, told me Susan was writing a memoir about Sarah and that he could not read it because he did not want to re-live those excruciating days and nights. I myself remembered being scared to death about Sarah and her chances the whole summer after she was born, and I wondered if I could manage to read the manuscript. I was hesitant when Susan asked me. Furthermore, it is always difficult to see yourself mirrored in other people’s eyes. As physicians we are programmed, at least on one level, to present ourselves as confident and poised. Ordinarily we don’t have to read a patient or parent account of how we behaved during a difficult time.

Curiosity eventually got the better of me, however, after Susan gave me her writing. She enticed me with a few chapters, and I knew I had to see the whole thing. With Kleenex box in hand on a private stretch of Cape Cod beach, I read the draft. My older daughter was with me and wondered what I was reading that made tears stream down my face.

“What happened to the baby? Why are you crying?” It was difficult to explain—some were tears of joy for how well Sarah did in the face of such significant problems, but mainly, they were tears of appreciation.

Susan had given me a gift, a rare glimpse into two worlds. One is the world of intensive care nurses. Whether in the neonatal or pediatric ICU, the job they do is incredible. As a physician who is a consultant in both units and may spend a few hours there each day, I certainly have had a healthy respect for their role. Reading this book, however, and seeing the relationship that the nurses built with this family made me understand, even more, how they truly are the primary caregivers. But what affected me most profoundly was the opportunity to see the experience of Sarah’s first year through Susan’s eyes.

As physicians, we may feel we are empathetic and caring, but we really have no idea the emotional roller coaster many of our parents are riding. Nor can we understand all the pressures that they feel and all the worries they encounter both inside and outside the walls of the hospital.
Susan’s story of her daughter Sarah’s first challenging year brings us along on the roller coaster. Reminding us again and again of the potentials, mysteries and strengths of the human body and human spirit, Small Wonder is a unique story by an incredible mother about her extraordinary child.