Newborn has rare blood disorder

BY BETH WHITEHOUSE | beth.whitehouse@newsday.com

"We want to make sure it's not her heart," the doctor explained when Steve returned to the hospital. Katie needed to be moved to the neonatal intensive care unit at Stony Brook immediately.

Stacy broke down and cried.

"You have to discharge me, because I'm going with her," Stacy insisted.

Stacy and Katie left in separate ambulances; Steve drove in his car. The intensive care unit was frightening. Beeping machines. Tubes and wires everywhere. Nurses and doctors bustling through.

The Trebings sat elbow to elbow with other parents holding vigil beside bassinets in the NICU. Parents who spend a lot of time in the unit call it the "Nick U" for short.

Doctors quickly ruled out a heart problem. Hemoglobin, the pigment in red blood cells that carries oxygen, continued to plunge. When hemoglobin drops, the heart pumps harder to circulate enough oxygen through the body. That causes stress on a healthy heart.

Katie's doctors wondered if the obstetrician might have lifted Katie from Stacy's body too quickly, which could have sent Katie's blood back into the umbilical cord. Maybe that explained her problem.

To fight the dropping count, Katie needed more blood. So on her first day on Earth, she had her first blood transfusion.

Steve pushed away thoughts his daughter was in mortal danger. For her part, Stacy saw something good in that Katie was bigger than all the other babies in the unit. They seemed tiny, while Katie weighed 8 pounds, 11 ounces, the biggest baby there.

As she tamped down fear, Stacy made a promise to her newborn. Over the next four and a half years, through all the hospital and doctor's visits, this promise would become Stacy's mantra, Stacy's prayer:

"Everything will be fine."

Cause for concern

Almost two weeks after her birth, Katie came home to Nesconset, just in time for Christmas. Everything seemed fine. In early January of 2003, a home health-care nurse made a routine follow-up visit to the house.

"Did you take Katie for a follow-up blood test?" the nurse casually asked Stacy.

"No," Stacy said, puzzled. "Why?"

The nurse pointed to Katie's discharge papers from Stony Brook University Medical Center. A scribbled note from the doctor read: "Suggest follow up CBC." The acronym referred to "complete blood count."

The next day, Stacy took Katie to her pediatrician, Keith Ancona in Smithtown, who sent Katie to a lab for the first of what would become weekly blood tests.

After one of those tests, Ancona called Stacy. "You have to take Katie to Stony Brook immediately," he said.

A normal hemoglobin count for a child measures between 12 and 16; Katie's had dropped to five. She needed a second blood transfusion right away. Stacy's hope that the transfusion after Katie's birth had fixed whatever was wrong crumpled.

"Do I really have to?" Stacy asked, crying.