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‘You’re a miracle’: Son’s
new heart gives coach hope

January 8, 2003

BERGEN COUNTY, N.J. - Frank Piccininni was more than just a proud father the first time he rolled a ball to his son, Christopher. He was a proud soccer coach.

‘‘I’m constantly kicking balls around the house, and he kicked it before he would pick it up,’’ the boys soccer coach said. ‘‘That made me very happy.’’

Frank and his wife, Jacky, treasure every ball Christopher kicks, every smile, every laugh, even every mess he makes around the house. Because it reminds them that when faced with a decision no parents should ever have to face, they made the right choice.

A little over a year after being told their 10-week-old child ‘‘might not make it through the night,’’ the Piccininnis celebrated the holidays they didn’t have with their son last year. And the first anniversary of his life-saving heart transplant.

‘‘You learn quickly that the holidays and the shopping and all the other stuff don’t mean anything,’’ Jacky Piccininni said from her Fair Lawn, N.J., living room. ‘‘Family is what’s important. We will have him here, with us, and for that we’re thankful.’’

The Piccininni house is a curious contradiction. It’s filled with the balloons that 18-month-old Christopher loves, shaped like pumpkins, smiley faces, and airplanes, right alongside signs that remind the few visitors the Piccininnis have to remove their shoes at the front door and wash their hands often.

Christopher is as normal as a child who must eat through a feeding tube and take as many as 13 medications a day can be. He loves to watch airplanes flying overhead and the fish swimming on his father’s computer screensaver. What furniture he can’t move, he’ll simply climb over.

He loves ‘‘Sesame Street’’ and ‘‘The Wiggles’’ and without any provocation will climb on your lap and honk your nose as if it were the bright red nose on a clown.

‘‘He is a funny child with a great sense of humor,’’ Frank said. ‘‘When he laughs, his personality shows right through.’’

The Piccininnis nearly lost all that 10 weeks after Christopher was born a healthy 8 pounds, 11 ounces on June 11, 2001. It all started with a simple cold.

‘‘My mother told me the night before that he wasn’t breathing right,’’ Jacky said. ‘‘I was embarrassed to bring him to the doctor because I had just been there the week before. When he wouldn’t eat, I called my sisters, I called my friends. Finally I called the doctor and they told me to bring him in.’’

Ten minutes after she reached the doctor’s office, Christopher’s blood pressure dropped and he started turning blue.

‘‘Then all hell broke loose,’’ Jacky said. ‘‘It was chaos.’’

The doctor, with the help of another from a nearby office, revived Christopher, and an ambulance rushed him and Jacky to St. Joseph’s Hospital and Medical Center in Paterson, N.J. A Teaneck, N.J., police officer pulled Frank off the practice field.

‘‘It was terrifying,’’ Frank said. ‘‘All he told me was that my son had been taken to St. Joseph’s in Paterson. When I got there, I knew something was wrong because there were way too many people going in and out of there. There had to be 10 to 15 people in there.’’

‘‘All I kept hearing was my baby crying,’’ Jacky said. ‘‘And I was thinking, ‘Why won’t he stop screaming? Why won’t somebody do something to help him?’ You don’t know because nobody would tell us anything.’’

Christopher’s heart was enlarged and unable to pump blood. Doctors don’t know what caused it, whether it was a genetic defect or a viral infection. It’s a question that haunts the Piccininnis as they decide whether to have more children.

When the doctor finally came out to talk to them, he told them he wasn’t sure if Christopher would make it through the night. They called a priest, and Christopher Piccininni was baptized that night in the hospital.

‘‘I remember feeling ‘Why is this happening to my baby?’’’ Jacky said.

Christopher made it through the night and even improved enough on medication to be released. But four days before his scheduled release date, he crashed again.

On Sept. 5, one week after he entered St. Joseph’s, Christopher was transferred to The Mount Sinai Hospital in Manhattan. Eventually the Piccininnis were given a choice no parents should ever have to face.

‘‘They told us we could leave him there on the machines until his heart gave out, or we could try for a transplant,’’ Jacky said. ‘‘The life expectancy for a child who receives a transplant at this age is five to 10 years. We had to decide whether we wanted to bury our child now or in five years. Do we want to get to know this child, love him, watch him grow up, only to let him go?’’

Frank and Jacky got some solace from the Internet, finding parents throughout the country who had been through the same ordeal. Some had gone with the transplant, some hadn’t. Some lost their children, some hadn’t.

‘‘One woman told me that burying her daughter at 8 weeks was the blackest thing she had ever done,’’ Jacky said.

The Piccininnis placed Christopher’s name on the list of international donors on Oct. 5. They were told the average waiting time for an infant donor heart was 100 days.

While they waited, Frank shuttled back and forth from Manhattan to Teaneck to teach social studies at Thomas Jefferson Middle School and coach as Jacky remained at Christopher’s bedside.

‘‘That was the season I was looking forward to the most,’’ said Piccininni, who led the team to a 9-10-1 record in 2001, a berth in the county tournament, and a first-round win in the State Group 4 tournament in his third year at the helm. ‘‘We had 16 seniors. But what really made the season was how supportive everybody was. I was alone, and it was tough. I tried everything I could not to take anything that happened with Christopher on the field.’’

‘‘I think the soccer was a little bit of a release for him,’’ said Ron Van Saders, the Teaneck athletic director who along with the assistants and the captains helped out with the coaching duties when Frank couldn’t make it. ‘‘He handled the whole situation with such dignity and class and mental toughness. He kept it separate from the program as much as possible.’’

The support has come from all over. Ramapo, N.J., boys soccer coach Evan Baumgarten and Frank’s sister, Keri Levine, each ran the New York City Marathon for the first time last month and raised more than $11,000 in donations in honor of Christopher for the New York Organ Donor Network. The money will be put toward education programs and donor drives.

The Paramus Catholic boys soccer team passed the hat and raised $300 that they donated in Baumgarten’s name. People who attended Teaneck’s county tournament game last year said a prayer for Christopher before and after the game. Opposing coaches would simply come up, shake Frank’s hand, and ask how he and Christopher were doing.

‘‘The entire soccer community has been terrific,’’ Frank said.

Thanksgiving came and went without a heart. The Piccininnis and the parents of another child waiting for a transplant ate their Thanksgiving dinner in the hospital hallway with the nurses in the unit while waiting for a donor heart.

‘‘All the stories I’d heard said that it comes at a time when these kids can’t go another day,’’ Jacky said.

It finally came three weeks later, after several ups and downs, with Christopher and his parents on their last legs.

‘‘I was crying my eyes out in the hallway things had gotten so bad,’’ Jacky said.

‘‘I knew something was up because people started coming in and out of his room,’’ Frank said. ‘‘Jacky was in the hallway crying when the nurse came over and said ‘There’s a phone call for you.’ ‘‘

Christopher received his new heart in a four-hour operation the morning of Dec. 13, 2001.

‘‘It was bizarre,’’ Jacky said. ‘‘You’re happy, and in the same split second you’re thinking he’s going to die on the table. What if the new heart doesn’t work?’’

‘‘It was harder after the transplant than it was before,’’ Frank said. ‘‘This is it. Now there’s no option.’’

The operation was a success, and Christopher left Mount Sinai on Jan. 9, 2002.

The talks with other families helped the Piccininnis deal with what would happen, but they couldn’t help them deal with the feelings that came up, particularly the guilt.

The guilt that Jacky felt when the child across the hall passed away, putting her own son one step higher on the transplant list. The guilt they both felt when they realized their son’s gift came because of somebody else’s tragedy. And even the guilt Jacky felt because she’d had only a few weeks to bond with Christopher before he got sick.

‘‘You want to feel absolutely awful,’’ she said. ‘‘As a parent, you want to feel so bad it hurts. With me, the adrenaline just kicked in. I felt like I was missing a feeling.’’

That feeling came right after the operation when Jacky, who had shunned many of the attempts by the hospital at counseling, sat down and wrote a poem called ‘‘Heaven Sent.’’ One line of the poem reads, ‘‘The heartbeat inside you is a gift from another, a priceless jewel from a child to whom you are now a brother.’’

Although she doesn’t know who the donor was, she sent a copy of the poem along with a letter and some pictures through the transplant coordinator.

‘‘I want whoever donated that child’s organs to know that they did the right thing,’’ Jacky said. ‘‘Hopefully they will know that we’re doing the right thing.’’

The Piccininnis are trying to settle into a normal life, learning how to be parents again to a child ‘‘with issues.’’ Last week, they raked the leaves outside while Christopher ran around the yard putting the leaves into the bags.

‘‘It’s a brand new heart,’’ Frank said. ‘‘When he cries, you’re afraid it’s going to pop out of his chest. They tell you not to worry about it, but it’s hard not to.’’

For the most part, Christopher, who is on anti-rejection drugs that also diminish his immune system, must remain in the house and away from other children to avoid a virus that could be deadly. He can’t be immunized.

‘‘Eventually we hope to get him together with other children,’’ Jacky said. ‘‘I will probably home-school him. He’s going to have to understand he has to wash his hands when he gets into and out of a car. He’s going to have to be a little obsessive-compulsive.’’

They don’t look far ahead, but they do look forward to the same things other parents do.

‘‘I’d love to get him to one of my practices and games,’’ Frank said. ‘‘I know I’ll be excited to see him run around and kick a ball.’’

Until then, they live one day at a time.

‘‘I wouldn’t trade a minute of it,’’ Frank said.

‘‘Oh, I’d trade a lot of minutes,’’ Jacky said as Christopher wobbled around at her feet. ‘‘But not these. We’re better people just for getting the chance to know this child.’’

Facts about transplants

From the New York Organ Donor Network:

-There are about 80,000 names on the international transplant list at any time. In 2001, there were 6,081 deceased organ donors. The Organ Donor Network is not involved in the living donor programs.

-17 people die every day waiting for a transplant. A new name is added to the list every 13 minutes.

-In the first seven months of 2002, there were 44 heart transplant operations performed in the United States on infants under the age of 1. There have been 1,177 heart transplants performed in the United States on infants under the age of 1 from Jan. 1, 1988 to July 31, 2002.

-79.5 percent of infants under 1 receiving heart transplants survive through the first year. 72.5 percent survive through three years.

-As of Nov. 8, 2002, there were 213 children who received a heart before their first birthday who were still alive after their third birthday.

-Only 1 to 2 percent of people who die make suitable donors.

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The New York Organ Donor Network is accepting monetary donations in the name of Evan Baumgarten and Keri Levine in honor of Christopher Piccininni. Checks should be made out to the New York Organ Donor Network and sent to:

New York Organ Donor Network, Att: Martin Woolf, 475 Riverside Drive, Suite 1244, New York, N.Y. 10115.


Knight Ridder Newspapers