Patients with Adult Congenital Heart Disease a Growing Population

HOUSTON - [January 6, 2005] –When cardiovascular surgeon David Ott was opening holiday mail recently, it was not a Christmas card that caught his attention but rather, a wedding invitation. The invitation was from Kari Anne Coker of Livingston, on whom Dr. Ott operated more than 20 years ago.

"Kari required emergency surgery within the first days of life," said Dr. Ott. "She was born with tetralogy of Fallot with double outlet right ventricle, a combination of heart defects that we used to call 'blue baby syndrome.' Born prematurely, she was very tiny – just three and a half pounds. It's amazing to think she's all grown up and planning for her own family."

In his initial treatment of Miss Coker, Dr. Ott performed a shunt procedure, a short-term solution that allows more blood to reach the lungs and lets the child grow until the problem can be fixed with more extensive surgery. Physicians wanted Miss Coker to gain more weight before completing the additional surgery but at age five, she weighed just 25 pounds and began experiencing health problems so severe that they could not wait any longer.

"I remember a little bit about that second surgery, meeting other heart patients. I remember my best friend would come and visit me in the hospital, and now she's going to be my maid of honor," said Miss Coker, adding that she's never had any health problems since the second surgery.

"She's just a miracle. The outcomes of both surgeries went so well," said Miss Coker's mother, Martha Coker. "She's always been feisty. She has a good attitude about her past heart history. It's never held her back or hindered her."

Indeed, Miss Coker has been playing the trombone since the sixth grade and participated in the marching band all through high school along with activities such as Future Farmers of America and 4H. Miss Coker, named in Who's Who of American Students, is completing her junior college studies and is considering a career in education, like her parents. This Saturday, she will become Mrs. Jessry Lewis.

The future Mrs. Lewis already has the distinction, at age 21, of being one of the newest members of a unique patient population – those patients surviving into adulthood after surgical repair of congenital heart defects. While she is currently in excellent health, Miss Coker's prospects for maintaining her heart health through the coming years is getting better all the time.

In the U.S. nearly a million children whose lives were saved by pioneering techniques long ago are now aging adults facing unique cardiovascular challenges, and their numbers are rising rapidly. Patients now living with adult congenital heart disease (ACHD) pose special clinical challenges for cardiologists. Adult cardiologists may be unfamiliar with the altered cardiac anatomy and physiology of a patient who underwent repair of a complex congenital defect, whereas pediatric cardiologists may be unfamiliar with the finer points in diagnosis and management of adult diseases such as coronary artery disease and diabetes.

Today, many members of the Texas Heart Institute professional staff hold joint appointments at St. Luke's and Texas Children's Hospital (TCH) and have ready access to state-of-the-art facilities. Plans are underway to combine personnel and facilities in an ACHD clinic here in the near future. The clinic will be staffed by two cardiologists who are now being trained as ACHD specialists in an adult/pediatric fellowship program administered jointly by St. Luke's, TCH and Baylor College of Medicine. Established three years ago, the five-year program is teaching trainees to recognize, diagnose and manage congenital heart disease and acquired cardiovascular disease in adults.

This program is the only one of its kind in the Southwest and one of only a handful in the U.S.  The goal of the program is to help create a workforce of cardiologists who are specifically trained and qualified to care for patients with ACHD, lead ACHD centers, and teach other cardiologists who want to specialize in this field.

World-renowned cardiovascular surgeon Denton A. Cooley, MD, founded the Texas Heart Institute in 1962 for the study and treatment of diseases of the heart and blood vessels. Together with the Institute's clinical partner, St. Luke's Episcopal Hospital, it has been ranked among the nation's top ten heart centers in an annual survey published by U.S. News & World Report for the past 14 years. For more information about the Institute, please visit www.texasheartinstitute.org.

St. Luke's was founded in 1954 by the Episcopal Diocese of Texas. St. Luke's is home to the world-renowned Texas Heart Institute, founded in 1962. In 2001, St. Luke's earned the Magnet designation, the highest honor in patient care. It is the first hospital in Texas and the Southwest to be so honored. For more information about the hospital, please visit www.stlukestexas.com