Borrowed Time

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Brooke understands her family's fears, though she's not changing her stance.

"They know this is who I feel I am and what's going to be effective for me, and that's not changing year after year," she says. "I mean, I was supposed to kick off around 30, and as I move further away from that, my family perceives I'm struggling. I know it's hard because they see a successful solution in Jordan. If I were my parents, I think it would be challenging to deal with the fact that I'm hoping to deal with this without a lung transplant."

The year is 1968, and Kim Sterling has just given birth to her first child, at Tacoma General Hospital in Washington. Chronic disease is the last thing on her mind. Walter and Kim's baby girl is tiny — born a month early, little Brooke weighs just under five pounds — but she looks healthy. The Sterlings bring their daughter home and settle into a routine of diaper changes and late-night feedings, but Kim feels right away that something isn't right.

"I began to notice that it was difficult for her to gain weight," she says now, looking back. "Everything went straight through her."

The family's pediatrician in Washington told the Sterlings he thought Brooke had celiac disease — a condition that makes it difficult for the digestive system to process food. He told Kim to put her daughter on a diet that excluded gluten and assured her Brooke would either "grow out of it" or, at the very least, the condition would become more manageable.

Life kept moving. Brooke learned to walk and talk. Though her digestion problems continued, Kim says Brooke was a curious, alert child. In a photo taken when she was 3, she looks healthy, her straw-colored hair pulled into pigtails, but there's an expression in her eyes, a look too serious for a 3-year-old's face. Life before her diagnosis wasn't awful, just full of tests, doctor visits and special diets. Walter and Kim decided to have another baby, and in 1972 Walter III was born, without any of Brooke's "digestive" troubles. By the time the family moved to Phoenix in June of 1974, Kim was seven months pregnant with their third child, Jordan.

Jordan was born September 4 of that year. Kim saw the signs immediately. Like Brooke before him, this new baby could not gain weight. He was always sick. By July of the next year, Jordan's condition had his mother extremely frightened.

"He got this horrific infection, and the antibiotics were not making any difference. I was getting worried, so I called the pediatrician and asked to schedule a conference meeting," she says.

The family's regular pediatrician was on vacation for the entire month, so Kim wound up sitting down with a new doctor, Steve Serlin, who had just finished his residency.

"He asked me a lot of questions, and he told me, 'Take Jordan home, and if he gets worse, I would want to hospitalize him,'" she says.

Jordan got worse.

That night, Kim recalls, Serlin took the Sterlings' medical files home with him to review. While looking over Brooke's file, he came across a note, scrawled years before by the pediatrician in Washington: "Thinking of testing for cystic fibrosis."

That pediatrician never did test for CF. He never even mentioned it to Walter and Kim.

Serlin immediately asked the hospital to administer what is called a sweat chloride test to little Jordan. Because cystic fibrosis affects the sweat glands, people with CF produce sweat that is extremely salty. During the test, doctors collect sweat and check to see how high the levels of sodium and chloride are. An abnormally high level of salt is indicative of cystic fibrosis.

Jordan's sweat tested high.

Serlin called the Sterlings and asked them to come in to his office to hear the results. The nervous couple went.

Had they heard of cystic fibrosis? Did they know what it was?

Yes, they'd heard of it. No, they didn't really know what it meant.

The doctor explained. Cystic fibrosis is an inherited genetic disorder that causes the body's sweat and mucus glands to malfunction, producing thick mucus that blocks organ passageways, causing lung infections and chronic lung disease. It also affects the body's digestion by preventing digestive enzymes from moving from the intestines to the pancreas.

The disease is deadly. There is no cure.

And their 18-month-old baby boy had it.

Kim says after the initial shock, her thoughts went to Brooke.

"Brooke was at my parents' house in Washington and she was having terrible stomach cramps, so they were going to take her to the hospital. I told Dr. Serlin, 'Call the hospital and tell them to administer a sweat chloride test. I will bet you anything that she tests positive, too,'" says Kim. "And she did."

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Megan Irwin
Contact: Megan Irwin