For the first time in months, Frank De Santiago can walk outside, feel the rain on his face, travel in a car, visit a museum and interact with people. It's everyday stuff to most people, but for the 16-year-old Texan, it’s exactly what the doctor ordered.
Frank had been cooped up in a hospital room since May, when he suffered a stroke. Doctors thought at first that it was just flu-like symptoms, but they soon discovered that the teen had dilated cardiomyopathy -- meaning his heart was more than twice the normal size, making it extremely difficult for it to pump blood efficiently. He was immediately flown from McAllen, Texas, to Texas Children’s Hospital in Houston, where he would soon make medical history.
“When I first saw him, he was very short of breath,” Dr. David Morales, a pediatric cardiovascular surgeon at Texas Children's Heart Center told FoxNews.com. “Because his heart was so big and working so slowly, the blood was just swirling in his heart and not moving forward.”
Within 24 hours, Frank was in the operating room, where Morales and his team implanted a temporary heart assist device called a Rota Flow.
“But once we saw he was not going to recover, we put in a mechanical heart pump called the HeartMate II,” Morales said.
The device allowed Frank to make medical history. After spending an extended period in the hospital rehabbing and getting better, he was discharged at the end of October, something that had never happened before.
“This is a promising next step for the care of children with heart failure, as Frank is the first patient on record to be medically discharged from a pediatric hospital with a mechanical heart assist device,” Morales said. “The device, which is implanted into the chest cavity near the heart, stays inside the body rather than outside. It helps the patient grow stronger by allowing them to eat well, exercise and enjoy life.”
The simple act of enjoying life is why the teenager’s story is so significant, Morales said. Up until now, pediatric hospitals have kept patients like Frank confined to the hospital, most likely the ICU, while awaiting a transplant. But now, because of this device, young cardiac patients can be given a new lease on life.
“Both the medical community and parents of children with serious and medically resistant heart failure should know that, using an intracorporeal ventricular assist device (VAD), we can provide greater freedom and normalcy for young people awaiting transplants,” Morales said. “This improvement in their quality of life and outlook can contribute to their physical health as well, assuming they follow their physician’s guidelines for activity and personal care.”
Because it had never been done before, it took about 7 weeks of planning before Frank could be discharged.
“I started to think about it in late September,” Morales said. “We took a few field trips to see where he could stay, because pediatric patients waiting for a heart transplant need to stay within an hour of the hospital. But I knew that Frank was really responsible and so was his mother.”
Texas Children’s Hospital is the first pediatric hospital in the world to use the HeartMate II, which is made by Thoratec Corp. The device, a smaller version of the company’s HeartMate XVE, is about the size of two “D” cell batteries laid end-to-end. It received approval from the Food and Drug Administration in April 2008 and is ideal for pediatric patients because of its smaller size and battery power.
“Frank is a perfect example of how this can work,” Morales said. “Because of this device, he’s stronger and is a much better candidate for a heart transplant than he was five months ago. I want people to start to realize that so we can get money to do more research.”
And more research is crucial, Morales added, since so many kids are dying from heart disease.
“Heart failure in children is not well recognized and it’s something that is growing at a tremendous rate,” he said. “If you take all pediatric cancer cases and put them together, and all the children that die as a result, there’s almost twice as many children who die from congenital heart disease.”
Morales also noted that the mechanical circulatory support team at Texas Children’s Hospital Heart Center uses five different types of left ventricle assist devices to treat pediatric heart patients — the most of any pediatric hospital in the U.S.
“I really do think this is the future,” Morales said. “As the technology improves we’re going to be putting in these devices that could last up to 10 to 12 years. There is also the possibility that this device may allow some of these children to recover their heart function.”
But for now, Frank is taking it one day at a time while he waits for his new heart. He’s being home schooled, and he comes to the hospital twice a week for check-ups — a very small price to pay for his freedom.
“I hadn’t seen people much while I was in the hospital,” the teenager said. “I was excited when they told me I was going to be discharged. I had been looking at the rain through a window and hadn’t really felt it for months, so it was really cool. It was like everything was new again.”