A Tribute to "A little rose..."

Amy Rose LaBarbiera (in the arms of her mother, Ingrid)

Amy Rose LaBarbiera, known to all as "Amy," had lived a life-time in her 5 years. She had started life with successful heart surgery when just five days old. Later she was diagnosed with pulmonary hypertension, an incurable heart and lung condition which became critical in early 1994 creating the need for a heart/double-lung transplant. That surgery took place in April, 1995 at Columbia-Presbyterian Medical Center in NY City.

By June, little Amy had suffered a rejection of that heart and was again struggling to breathe. In August, the heart was working well, but a lung biopsy revealed that she had developed a terminal condition in which the airways of the lungs gradually become blocked until there is no room for air. There was no known effectvie treatment. With very limited options, her parents, Ingrid and Lenny, decided to try another lung transplant, mostly because of Amy's love of life.

The November 1995 surgery for the second lung transplant went well but for a few exceptions. Her dad said, "After about 2-1/2 weeks, Amy began to shine again. In February of 1996 she returned to preschool where she "majored" in swinging, bike riding, running and talking." Amy wanted to go on to ballet and even gymnastics. She danced and read and talked nonstop about her plans for the future. "She wanted to do everything," her mother said, "and she did lead a pretty normal life for this whole year. Maybe she wasn't as fast as the next kid on the block, and maybe she didn't have as much stamina, but Amy could pretty much do what she wanted to do."

And that included her dream of participating in the US Transplant Games in Salt Lake City, Utah.

Come August, Amy traveled with her parents and little sister, Juliana (who wore a home lettered shirt that shouted: "GO AMY!" on it) to those Games.

As the second youngest member of Team Philadelphia, Amy competed in the 50 meter dash, long jump, and softball throw. She was an inspiration to everyone and glowed with pride upon being presented a bronze medal for her success in the dash.

When Amy and her family returned to their home in Flemington, NJ, she found herself fighting a serious lung infection. That resulted in her hospitalization at Children's Hospital of Philadelphia for most of the remaining three months of her life.

"Amy, quite simply, was a fabulous child" described her mother, Ingrid. Funny. Pretty. Gregarious, when she wasn't feeling too sick to be sociable.

In a service following her passing, Pastor Terry Hertzberg painted the picture of "Amy's dash through life..." Pastor Otto Reinbacher reminds us all that we have but "one life to live," but Amy had four lives, "and she lived them all well!" He explained that Amy began her first life with her birth, the second with her re-birth in holy baptism, a third in the new life afforded her through the miracle of the heart/double lung transplant, then yet another (her 4th) with the second lung transplant. Amy was the first child to receive another lung transplant after having undergone an earlier heart/double-lung transplant, leading to hope for others in the future. He went on to describe her "hearty, hearty appetite" carrying off 10 desserts at the church picnic.

Later at the same picnic, Amy "dunked the pastor" in a softball target toss game - "exhaulting in her ability to do this. She laughed, and she laughed, and laughed..."

He went on to describe her entering into her fifth life, when on Monday morning at 4:30am, God said He wanted this angel, Amy, to be with Him, to be relieved of her earthly pain, sitting in Abraham's lap in all her glory..." "There she joins in her songs, laughing the days away with no more tears and no more pain. She is in heaven."

Amy has brought inspiration to all who knew her.

Her story will be featured in an upcoming hour-long HBO TV special on June 12, 1997 at 8 pm tentatively titled:


As her parents are quoted in the NEW HORIZON's newsletter of the Liaisons for Life Transplant Support group, "We wanted others to share in the joy Amy brought into our own lives." HBO has agreed to still air it - even though it was not the long-term success story they had originally set out to document. But no one can deny that even for this last year, Amy's story was a success story.

When the LaBarbieras knew that Amy was going to die, they offered to donate her organs, "But in her case, there had been too much damage," Ingrid noted. She went on to say that if her daughter's death is to accomplish anything at all, it should be to get the point across that people have got to understand that if a loved one passes away and their organs are good, there are children and adults whose lives can be saved."

Note: Some parts of this story were paraphrased from various newpaper articles but especially from Amy's article in the Fall 1996 issue of the National Transplant Assistance Fund's newsletter, NEW START NEWS.