Brave Heart

At 20 months and 30 pounds, Austin Ball is tall for his age and bursting with energy. It’s hard to believe he’s the same child who, at 5 months, arrived at Children’s Hospital of Pittsburgh of UPMC on life support, his future uncertain.

Before his birth, Austin had been diagnosed with a large tumor in his left ventricle that prevented his heart from working normally. Within hours of his birth at Georgetown University Medical Center in Washington, D.C., Austin was whisked off to the cardiac intensive care unit (CICU) at Children’s National Medical Center in Washington.

“I didn’t even get to hold him,” remembers his mother, Cher. “They were worried that he might immediately go into cardiac arrest.” Two weeks later, when Ms. Ball took Austin home to Waldorf, Md., he was on 12 heart medications. Austin ate and slept well, but his heart often beat much faster than normal.

Surgery to remove Austin’s tumor would be risky. So at 4 months old, Ms. Ball took Austin to Johns Hopkins Medical Center in Baltimore to begin the evaluations necessary to place him on its heart-transplant waiting list.

At Children’s National in September, Austin had a procedure to measure the pressure in his heart, one of the last steps before being added to the transplant waiting list. Austin’s tumor made the procedure especially delicate. Two days later, in the CICU, he had a cardiac arrest.

Doctors worked feverishly to revive Austin. “Finally, our cardiologist said ‘There’s one more thing we can try. I’m not sure it will work. They don’t use it often — it’s called ECMO,’” Ms. Ball says.

ECMO — extracorporeal membrane oxygenation — is an advanced form of life support where a machine adds oxygen to blood and pumps it through the body. ECMO allows time for a patient’s own heart and lungs to heal or for a donor heart to be found. A patient can remain on ECMO for only about two weeks without a risk of serious complications.

Children’s National did not (in the fall of 2008) have an active heart transplant program, so Austin would have to be moved, on ECMO, to another hospital for a transplant. Children’s Hospital of Pittsburgh of UPMC is one of few children’s hospitals in the United States that will transport children on ECMO.

On a stormy autumn day in Pittsburgh, Kent Kelly, director of Children’s ECMO service, got a call saying that a child on ECMO needed to be transported from Washington, D.C.

“We couldn’t leave for about 18 hours because visibility was bad — we had to wait for clearance for the helicopter to fly,” says Kelly.

The four-member ECMO transport team arrived at Children’s National the next afternoon. Very carefully, Austin was disconnected from the hospital’s ECMO system and connected to the one on which he would be transported to Pittsburgh.

With the ECMO equipment, the transport team, and the flight crew on board the helicopter, there was no room for Austin’s mother. So Ms. Ball kissed her son goodbye and set off to drive to Pittsburgh.

When the medical team at Children’s Hospital of Pittsburgh of UPMC met to work out a treatment plan for Austin, a heart transplant wasn’t at the top of the list.

A year earlier, Children’s Heart Center had treated another child with a large tumor in his left ventricle. “We removed the tumor, and the child has done extremely well,” says Steven A. Webber, MBChB, chief of Pediatric Cardiology. The team thought this procedure might work for Austin.

Austin also would be fitted with a special infant-sized heart pump known as a ventricular assist device. This pump is not on the market in the United States, but Austin could have one because Children’s surgeons are taking part in trials testing the device.

Austin remained sedated on ECMO for a week while the pump was shipped from Germany. Then, in a nine-hour operation, Victor Morell, MD, chief of Cardiothoracic Surgery, and his team removed Austin’s tumor and attached him to the pump. Three days later, they performed a second operation to try to shrink Austin’s left ventricle, which the tumor had stretched.

Meanwhile, Austin’s own heart began beating more strongly on its own. The surgeons removed the pump a week later. The next day, they took out the breathing tube — his lungs were working without assistance.

Austin underwent two more open heart surgeries in November and December — one to remove an aneurysm that had formed in his aorta, and another to insert a mechanical heart valve.

As spring approached, Austin no longer needed around-the-clock nursing care. Ms. Ball took him home, where he was reunited with his 7-year-old sister, who had been staying with her grandmother. The
family celebrated Austin’s first birthday on April 29, 2009.

Despite around-the-clock heart medications, Austin’s heart sometimes still beat too fast. He wasn’t eating well. Any exertion made him sweat. In mid-May he was admitted to Children’s National with coughing and vomiting — signs that his heart was failing.

A heart transplant was now Austin’s only option.

A five-hour ambulance ride brought Austin and his mother to the new Children’s Hospital in Lawrenceville just three weeks after it opened. Austin was placed at the top of the waiting list for a donor heart.

In a six-hour operation on June 5, 2009, Peter Wearden, MD, PhD, performed Austin’s heart transplant, the first at the new hospital.

When he woke up, Austin started to eat, says his mother. And eat. And eat. By Christmas, Austin had gained eight pounds. “He has so much energy, I feel like I have triplets,” says Ms. Ball. “I’ve traded my
hospital shoes for track shoes.”

Ms. Ball brings Austin back to Children’s every few months for a checkup, and he sees a pediatric cardiologist in Washington, D.C. “He’s on what they call a holiday right now — doing well, no rejection, progressing like a normal kid,” says Ms. Ball. “But I know he might have another bump in the road.”

In the meantime, she’s savoring watching him thrive. “Every day it’s a joy to see how far he’s come.”

Read more in Promises.

  • Kate

    What an amazinng boy! I am glad his ECMO worked wonders for him. I am glad to be apart of this amazing hospital!

  • Jennifer

    Brad Kuch is a very good friend of mine.
    I know he is heavily involved in this type of work. I think Children’s should be glad to have Brad.

  • Rose

    It is Austin doing so well. I remember the wait well for his 1st transport and his long road. I wish you all well and hope not to see him too often. That means he continues doing well. Give him a hug for me.