Drs. Martha Carpenter, Howard Gutgesell, William Hammill, Tracy Hoke, Andrew Hoyer, Anitha Jayakumar, Scott Lim, Paul Matherne, Nancy McDaniel, and Karen Rheuban.

Phone: 434-924-9119

Fax: 434-924-5656

e-mail: mailto:swh5w@virginia.edu (Susan Wilmer, Business Manager)

Or page the pediatric cardiology attending on call:

Phone: 434-924-0000

Patient's name
Patient's birth date
Parent's name
Home phone number
Work phone number
Diagnosis, if known
Preference for physician
Preference for date and time
Tests needed, if known

Real Life Medicine

Congenital Heart Disease:  A Lifetime of Care

After suffering breathing problems shortly after birth, Akaila was put in the neonatal intensive care unit.  The next morning, pediatric cardiologist, G. Thomas Albrecht, Jr., MD., was called in after the staff found a heart murmur.  In performing an emergent echocardiogram, Albrecht uncovered the problem; hypoplastic left heart syndrome, a critical defect in which the left side of the hear is underdeveloped.  Although the condition represents just 1.5 percent of congenital heart defects, it is the most common cause of cardiac-related neonatal mortality.  Akaila was near death.

That same day, Albrecht had Akaila airlifted to the University of Virginia Children's Hospital for a life-saving procedure.  Later that afternoon, an interventional pediatric cardiologist from UVA performed a cardiac catheterization to open up a hole in Akaila's heart to increase her oxygen blood levels.  After they were fully informed of the complex and difficult nature of Akaila's congenital heart defect, the Zimmermans elected to try staged palliation, a three-step open heart surgical procedure that could save Akaila's life.  Monday morning, Akaila underwent her first open-heart surgery - a Norwood procedure conducted by Irving L. Kron, M.D., a cardiovascular surgeon and chair of the Department of Surgery - to convert the right ventricle into the main systemic ventricle.  After a six-week stay at UVA Children's Hospital, Akaila was released.

Three months later, when her oxygen saturation level declined, Akaila was transferred to UVA again.  As part of the second step of the staged palliation planned for her, Akaila had another heart catheterization and underwent a hemiFontan procedure.  Three weeks after the second open-heart surgery, Akaila returned home.

Since them, Akaila has had three more open-heart surgeries and numerous catheterizations to do repairs - the last in February 2006.  Now age 5, Akaila is attending school full-time this fall.  But like all congenital heart defect patients, she faces a lifetime of cardiac care.

A Positive Experience

Through it all, Akaila's mother, Suzanne, has had nothing but praise for the UVA pediatric cardiology.  "It's been nothing but positive," she says, "They're very professional.  When my husband had to return to Richmond for work and to take care of Akaila's older brother, Anthony, I had to spend a lot of time in Charlottesville by myself.  They looked after me as they looked after Akaila.  I really liked that.

"They offer a lot of specilty services," continues Suzanne.  "The transition from the ICU to the main hospital was smooth.  The doctors on the floor knew her situation.  They all worked well together, getting input from other departments, like pulmonary and gastrintesinal, when it was needed.  That continuity was very important."

UVA's Team Approach To A Lifetime of Care

Akaila's case was among the most complicated that the pediatric cardiology team at the UVA Children's Hospital has seen, says Paul Matherne, M.D., the program's medical director.  The catheterizations and surgeries she has undergone are part of a comprehensive suite of services UVA offers to provide complete care for children with congenital heart defects.  "In just the past seven years, we've built a very large program of congenital cardiac care that covers patients from prenatal diagnosis through adulthood," he says.  "The key is communication with referring cardiologists.  We work with cardiologists from all over the state in a collaborative way to meet their patients' needs."

UVA's team consists of both pediatric and adult cardiac specialists from the UVA Children's Hospital; and UVA's Heart and Vascular Center. Together they have developed an adult transitional program to provide patients with planned, coordinated care throughout life.  "We have more children with complex structural heart problems that now survive into adulthood, " Matherne said.  "This is new, and the transition from pediatric cardiac care to adult care is important."

As for Akaila, the Zimmermans continue to take her to Albrecht for any heart-related issues that come up.  "For all the procedures, we go to UVA.  We wouldn't go anywhere else, " says Suzanne.