Family Sorts Out Concerns And Conflicts
August 05, 2001

By Nancy McVicar HEALTH WRITER

Soon after Spencer Crawford's first birthday party in early June -- a celebration of his life and his will to survive -- doctors told his parents that he was going to die.

"They said he had weeks or months, not years," said his dad, Chris Crawford, a Boynton Beach police officer.

It was the third time he and his wife, Ellen Kaplan-Crawford, had been told to prepare for their son's death. But Spencer twice has proved doctors wrong, surviving open-heart surgery three days after his birth and a heart transplant three months later.

Spencer's transplant story, "A Baby with a Broken Heart," was published Christmas Eve in the Sun-Sentinel.

This time, because of the progressive nature of a rare disease called pulmonary vein stenosis, doctors at Miami Children's Hospital told them nothing more could be done. The pulmonary veins would become so obstructed that the lungs no longer could supply oxygen-rich blood to the rest of his body.

"We asked what it was going to be like for him," Chris said. "They said, `We really don't know. Probably like congestive heart failure.' All I could think was we are going to be watching our son gasping his last breaths."

It was a cruel development, coming at a time when Spencer had seemed to be more like a normal child his age.

He delighted in trying out new words, a favorite being Elmo, the fuzzy red Sesame Street character, in several different intonations -- EL-mo, El-MO, El-mo.

Preparing for the worst

As she was preparing for his birthday party, Ellen began to feel a vague uneasiness.

"I started feeling very nervous," she said. "There had been some subtle things. He was a little fussier. I really wanted it not to be anything bad."

At Miami Children's Hospital, doctors confirmed her fears. They found that one of the stents inserted into his vein to try to keep blood flowing from the lung to the heart and the rest of his body had come loose, allowing that vein to close. Two others were clogging with an overgrowth of cells.

It was the worst possible news.

Chris and his wife, Ellen, began making funeral arrangements and trying to give Spencer the best quality of life. They no longer had to monitor him as closely for signs that his transplanted heart was in danger of rejection.

They worried about how their other son, Kyle, 2 1/2, still too young to understand, would handle Spencer's death. He already was exhibiting concern about his younger brother.

"Every time I put Spencer in his car seat, Kyle would ask, `Spencer, doctor? Spencer, hospital?' And he was exhibiting regressive behavior like thumb-sucking," Ellen said.

Ellen, who spent 16 years as a nurse before getting her law degree, was starting to come to terms with losing her son, but did not stop searching for something that could save him. She read a June 10 article in the Sun-Sentinel about radiation being used to keep stents open in adults with coronary artery disease and sent it to Spencer's doctors in Miami and St. Petersburg.

She e-mailed them to ask if it was being done in children.

"The answer was: `Too bad we're not further along, but they're not doing it in kids, and they're not doing it in veins,'" she said.

Weighing decisions

But through an Internet support group, she learned in late June that doctors at Children's Hospital Boston had just used radiation to try to keep open the veins of a 3-year-old girl with the same condition as Spencer's.

"I was on the phone to them the next day, asking them what they needed," she said. "I sent them Spencer's films and said, "We're coming up.'"

Chris was not sure he wanted Spencer put through another catheterization. "It's a quality-of-life issue," he said. "Are we just prolonging the inevitable?"

"I thought we should leave no stone unturned," Ellen said, "while Chris is more of a realist."

They talked it out and together took Spencer to Boston. On Tuesday, he had the procedure that is his only hope of survival. He is recovering and fighting off a possible lung infection that developed Thursday.

"Chris is still not for it," Ellen said the day after Spencer went through the six-hour surgery. "But he's here because he wanted to support me."

Chris returned to Boynton Beach to be with Kyle, while Ellen is staying with Spencer in Boston. Before Chris left, he said he is happy they did the procedure.

"I'm always concerned about the quality of life, what it's going to be like for him down the road, and I've always been concerned about the pain issues," Chris said.

"I couldn't tell her not to do it, because she has different feelings," he said. "Mothers are closer to their babies than men are. I guess inside myself, a large part of me didn't want to do it, but I was worried that down the road I might feel guilty that we hadn't.

"The whole thing has been hard."

Nancy McVicar can be reached at nmcvicar@sun-sentinel.com or 954-356-4593.

Publication Date: Sunday, August 5, 2001 Edition: Broward Metro

Section: NATIONAL Page: 17A

Publication: SOUTH FLORIDA SUN-SENTINEL

Illustration: PHOTOS 2 Caption: Staff photos/Susan Stocker ANOTHER CHANCE: Dr. Stanton Perry, chief of invasive cardiology at Children's Hospital Boston, and interventional cardiology fellow Dr. Duraisany Balaguru work to clear cells obstructing Spencer Crawford's veins on Tuesday. Spencer's parents were making his funeral arrangements before learning about the procedure. GRATEFUL: Spencer and his mother, Ellen, celebrate his first birthday at their home in Boynton Beach in June. Soon after, doctors told the family Spencer had months, at most, to live. Keywords: MEDICAL PROCEDURE CHILD HEALTH FAMILY