02/12/04
By Rebekah Chrysler
 

If a typical newborn baby's aorta could be compared to a five-lane highway, then four lanes of two-year-old East County resident McLain Miller's heart were considered closed for construction when she was delivered.

Among two other serious congenital heart conditions, which typically take 24 to 48 hours after birth to diagnose, Miller was born with coarctation of her aorta, a narrowing condition that was repaired via open-heart surgery when she was six days old but is the number one killer of newborn babies with heart defects. She also continues to struggle with a condition known as subaortic stenosis, or a narrowing of the aorta below the aortic valve, and problems with the growth of her mitral valve, which has developed at a slower pace than the rest of her heart.

"All the things she has are relatively common, but combined, they make her an anomaly," said mother Kay Miller.

Like most families in the area whose children suffer from some type of heart defect, the Miller's sought out the services of Pediatric Cardiology Associates based at All Children's Hospital in St. Petersburg. Deemed one of the best treatment and surgical facilities in the world, which has one of the highest success rates for heart transplants and is the only comprehensive program in the state, the practice at All Children's combines a team of nine pediatric cardiologists, each with a different specialty. In addition to those specializations - interventional cardiology, perinatal cardiology, invasive and non-invasive cardiology, transplant cardiology and electrophysiology - the team of doctors is conducting independent research on how to treat babies for heart conditions while still in the womb and how to care for those adults who have survived congenital heart defects and are now having babies.

"We have such a good track record in successful heart surgeries and we've been doing this for so long, that our babies are now becoming adults," said Dr. Jorge McCormack, who practices with Pediatric Cardiology Associates in combination with the Congenital Heart Institute of Florida and the University of South Florida at All Children's. "We are the leaders in developing a program - together with our adult cardiologists - to take care of our survivors. "This program has only been successful for 20 years," McCormack added. "They used to die - now, we're saving them, and they're becoming grown-ups."

McLain Miller has undergone three open-heart surgeries since she was born - all of them with the same team of surgeons, nurses and cardiologists at All Children's, namely Dr. Jorge Giroud, who specializes in invasive cardiology. After her successful first surgery, Miller went through a second at just 10 months old. Surgeons attempted to widen her aorta below the aortic valve by carving out tissue, which, as Kay Miller explained, was complex due to the close proximity of the wall to the timing mechanism of the heart. Also during that time, the surgeon repaired a ventricular septal defect.

"It's kind of like cutting into a wall in your house without knowing where the wiring is," Kay Miller said. "If you hit the wiring, it causes sparks. If they would have hit the timing mechanism, it would have thrown her heart rate off and she would have had to go on a pacemaker."

Although it appeared successful, McLain Miller's second surgery ended in a recurrence six months later. Jan. 7, she underwent her third procedure, which was the same as the second, just slightly more aggressive. As of two weeks ago, Kay Miller said the repair seems to have taken nicely and despite having to be monitored on a pacemaker for four days after the third operation, McLain emerged a healthy toddler.

"It's so hard; we thought we were done the first time," Kay Miller said. "The third time, it was the worst nightmare that we had to go back again."

According to McCormack, McLain Miller's case is like many others. The couple's baby appeared completely healthy while in the womb. Although the program at All Children's is working on its ability to diagnose certain conditions before the baby is born, McCormack said there are still hundreds of circumstances that make it hard for them to do so.

"Out of every baby born with a significant heart problem, we know one out of three of them has a heart problem while they are still in the womb," McCormack said. "But many times, there are no signs. A baby could be missing half a heart and still develop within the womb completely normal." Kay Miller said she and her husband are a family that least expected this to happen. She said they lead healthy lifestyles and neither of their families has any history of congenital heart disease.

McCormack said there really is no method of prevention yet, which is why he and his team have started conducting embryology research.

"Most heart conditions have already developed before a woman even knows she's pregnant," McCormack said. "Unfortunately, today, there is not a lot we can do to prevent these things, but we'll get to that point."