Everything in the Tamborino house is bigger—the meals, the celebrations and, without question, the affection. Parents, Norine and Frank, do everything bigger, because four of their five boisterous children—Julie, 20, Tori, 17, Catherine , 15, and Frankie, 10—have cystic fibrosis, and they know they have to make each moment count. Having been in and out of several health care systems, the close-knit family found a home away from home at UNC. This is the Tamborinos’ story.
It was 1994, years before newborn screening for cystic fibrosis would become the standard. The birth of Norine and Frank Tamborino’s third child, another daughter, Victoria, did not go as they had anticipated. There was concern about poor fetal movement, possibly the result diaphragmatic hernia, followed by a complicated birth. Norine was relieved to have avoided a C-section and that the baby didn’t have a diaphragmatic hernia after all. Then the doctors informed the couple their newborn girl had a bowel obstruction.
“When a newborn presents with a bowel obstruction, there’s a good chance of CF,” recalls Norine. “At the time, the only (diagnostic) option was a sweat test, but Tori was the first kid in the area to have blood test to determine CF.”
The test came back positive. Tori had cystic fibrosis. Her older sisters, Elizabeth and Julie, then 5 and 3 years old, were soon tested, as well. Elizabeth came through the test fine, but Julie was also found to have disease.
Two more children would follow, Catherine, two years later, and Frankie, five years after that. Cord blood tests done shortly after their births proved the two youngest inherited CF, as well, meaning four of the five Tamborino children have cystic fibrosis.
Cystic fibrosis is caused by an inherited gene defect which causes thick, sticky mucus to accumulate in the lungs and digestive tract. The chronic condition, affecting about 30,000 children and adults in the United States, hinders the body’s ability to break down and absorb food and can cause lung clogs leading life-threatening infections. Currently there is no cure.
With four children living with the same chronic disease, life in the Tamborino house is certainly different than in most households with the daily therapies and medications. There’s the daily chest PT with the percussive vest, a practice Norine and Frank jokingly call “legalized child abuse,” beating the gunk out of their kids’ lungs.
The kids also take vitamins and special enzymes before they eat. And boy do they eat! In an age of calorie counting and watching fat intake, the Tamborino children delight in meals laden with butter and cheese and anything else they desire, consuming 4,000 calories or more in a given day to maintain or gain weight.
Still, the family strives for their own normal.
“We worked really hard to make life as normal as possible,” comments Norine. “Friends don’t think anything is different unless (the kids) are sick. I live in my car, all of them participating in sports, big soccer players, cross country. I never imagined I would spend so much time.”
“But we are very blessed in how healthy they’ve been,” reflects Norine.
It’s a fact she attributes in no small part to the care the kids have received at UNC over the years.
“I will tell you, after being to three health centers, the bar is so high at UNC,” says Norine, herself a 30-year veteran of the medical field, 25 years as a nurse. “The dedication of that staff is unmatched. They work hard to make those children feel comfortable. There’s much more of a team approach and a respect for the children.”
And along with the world-class care has come the opportunity to participate in leading-edge clinical research and findings at UNC’s world-renowned cystic fibrosis center.
“Providing the best CF care depends on using treatment guidelines developed for our patients, applying quality improvement methods and being transparent about our clinical outcomes,” says Dr. George Retsch-Bogart, chief of the division of pediatric pulmonology at UNC. “In the decade since N.C. Hospital welcomed its first patients, new inhaled antibiotics, new airway hydration therapies, a new anti-inflammatory agent and new formulations of pancreatic enzymes have been added to the chronic therapies our patients receive.”
And the hope of an eventual cure remains on the not-too-distant horizon. In the meantime, the Tamborinos count their blessings and live life to the fullest.
“What is a little thing to someone else is a grand thing to us,” says Norine, who likens having five kids with cystic fibrosis to having a ticking time bomb in their house. “When everyday life is uncertain, every moment is a Kodak moment.”