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The Smallest of Hearts

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Alistair Hennessey

Establishing a plan of care to treat her son Alistair’s heart defect at birth helped ease Kelly Hennessey’s anxiety.

By identifying a serious defect before a child is born, the experts in Seattle Children’s Prenatal Diagnosis program enable families and their healthcare providers to establish a plan of care for before, during and after birth.

Alistair Hennessey has yet to utter his first intelligible word, but one day his parents will likely teach him the tongue-twisting term “Ebstein’s anomaly.” It’s the name of a rare and potentially serious heart defect with which Alistair was born in May 2006. One flap of the valve between his right atrium and ventricle fails to close properly, allowing blood to backflow through his heart.

Using fetal echocardiography, doctors at Children’s diagnosed Alistair’s condition before he was born, enabling his healthcare team to plan the treatment he would need, and giving his parents, Kelly and Seth, time to come to terms with this unexpected twist.

Time to Plan

“When infants are separated from the umbilical cord, their circulation changes,” explains Dr. Mark Lewin, co-director of Children’s Heart Center, which performs about 300 prenatal screenings each year in its Echocardiography Laboratory. “If they have a cardiac defect, they can become critically ill over a period of hours or days after birth.”

Because the initial shifts can be subtle, an infant with an undiagnosed heart defect may go home 24 hours after birth with no sign of danger. Soon after, however, Children’s may get a call that the same infant, now critically ill, needs evaluation and treatment. Prenatal diagnosis prevents such a crisis. Instead, the obstetrician, pediatric cardiologist and others can plan the delivery and necessary early-life care.

A Window to the Heart

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Dr. Mark Lewin performs a fetal echocardiogram.

A fetal echocardiogram is an ultrasound of the fetus’s heart – a moving, two-dimensional image of the heart’s structures that displays on a television screen, showing doctors the size, shape and function of the chambers and valves.

“Dr. Lewin did a very thorough echocardiogram, and then he sat down with us and drew out what Alistair’s malformation looks like,” says Kelly Hennessey.

Lewin then explained that Alistair’s defect was moderate and he might never need valve-replacement surgery, or at least not until adolescence. But immediately after birth, he would need close monitoring and medication. The explanation and subsequent prenatal visits helped ease the Hennesseys’ anxiety and uncertainty.

“We were able to feel that this was something we could handle. Going into the third appointment, we knew what the game plan was going to be the day he was born,” recalls his mother. “We were going to have the delivery at Evergreen and transfer Alistair to Children’s later that day.”

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Dr. Mark Lewin, chief of cardiology at Seattle Children’s Hospital, talks about working with families and caring for patients at the Heart Center.