A new heart

Two months after a heart transplant, a 13-year-old Tottenville boy is looking forward to being a typical kid

Monday, April 27, 2009

By ANDREA BOYARSKY

STATEN ISLAND ADVANCE

STATEN ISLAND, N.Y. -- Colorful signs declaring "Welcome Home Dan" and balloons decorate the Carsten family's Tottenville home. A 13-year-old boy smiles as he and his mother embrace. The sign on the front window explains it all: This is "the home of a new heart."

On Feb. 20, Danny Carsten received a heart transplant. The affable teen who enjoys robotics, video games and baseball was born with hypoplastic left heart syndrome (HLHS), a disorder in which the left side of his heart never developed, leaving him with essentially half a heart.

Four days after Danny's birth, he had the first of three open-heart surgeries to create a new blood flow path using his right ventricle. The second came at 10 months and the third at 23 months.

"When he was born, they told us they didn't know how long two chambers could do the work of four," explained Danny's mother Denise Carsten. "They said it could be 10, 20 years... It came faster than we thought."

Dr. Donna Better, a pediatric cardiologist who has treated Danny since he was in utero, said that there's no known cause for HLHS. It can be genetic, but many of the approximately 2 in 10,000 people born each year with the disorder develop it sporadically.

Thirty years ago, HLHS was fatal, Dr. Better explained. Today, patients usually survive the three open-heart surgeries -- called the Norwood, Glenn and Fontan -- at a rate of 85 to 90 percent and have at least a 75 to 80 percent chance of five-year survival. The surgeries are not a cure, but they can help patients live with their own hearts for a number of years.

The other option is a heart transplant. This is usually done after surgical options have been exhausted and the heart is no longer treatable, said Dr. Better.

"Heart transplantation is like replacing one chronic illness with another," said Dr. Better, who is based at Winthrop-University Hospital in Mineola, N.Y., and also practices at the Morgan Stanley Children's Hospital of NewYork-Presbyterian in Manhattan, where Danny received his transplant.

"Since these are young children, the older we can [keep] them without a transplant, the better we can prolong their life."

Following his early-childhood surgeries, Danny was able to engage in some typical kid activities, including low-impact sports. However, about two years ago, he started vomiting when doing physical activities. He had trouble walking up stairs and huffed and puffed whenever he exerted himself.

As a result of Danny's heart doing double work, he had developed another ailment, cardiomyopathy, a thickening of the heart muscle.

On May 31, 2008, he was put on a transplant list. At 5-feet-2 and weighing 100 pounds, Danny was competing with adults who were small in stature for a suitable heart.

"We look for an ideal candidate for a young person. We don't want it to be from an older person who has given it a hard life," Dr. Better said. "We want a heart that will last the ages."

For several months, he was still able to continue with his normal routine. But in November, Danny's health started to decline. In January, he spent two weeks in the hospital.

Less than a month later at 7:30 p.m., Denise Carsten and her husband Bill received the call they'd been waiting for.

"You're never ready," Mrs. Carsten recalled. "I had a suitcase by the door. When it happened, I couldn't remember anything."

She felt mixed emotions. Mrs. Carsten was happy for her son, but felt terrible for the donor family who lost a loved one. She was also proud of her son, who stayed strong so as not to scare his two sisters, Erin 16, and Emily, 10.

Danny's surgery -- which lasted several hours and required sawing open his sternum to get to his heart -- had few complications. After a two-week stay at Morgan Stanley Children's Hospital he was released.

The bones in Danny's chest have almost completely mended, and he's ready to make a fresh start with his new heart. The eighth-grader went back to Paulo Intermediate School last week, and is looking forward to riding the roller coasters with friends during a senior class trip to Great Adventure.

Next year, as a freshman at Monsignor Farrell High School, he plans to tryout for the school baseball team. The only two things doctors told him he can never do: bungee jump and skydive.

Danny will have to take anti-rejection medications for the rest of his life. Currently, he's on about a dozen others, including antiviral, antibacterial and anticlotting drugs, as well as iron and magnesium supplements.

"It's a small price to pay," said Danny. He also has to go for biopsies to check for heart rejection and other heart tests for the rest of his life.

Because of the risk of rejection and complications, Danny's new heart may not last forever. He could need a second or even third transplant down the line.

The Carstens worry about what will happen when Danny gets older and is no longer on their insurance. His medications alone would cost around $8,000 a month without insurance. Right now, the family pays about $500 each month in co-pays, and the Have a Heart Foundation of Staten Island recently donated money to help ease the financial burden.

But the family is trying not to dwell on what could be, rather the Carstens appreciate the gift they've been given. They're already planning a trip this summer and a party to celebrate Danny and his new heart.

"I'm not really thinking about down the road," Danny said. "I just want to live life."