Spring 2010 - SSM Cardinal Glennon Children's Medical Center

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Living With Cystic Fibrosis At 18 months, Mark Leezy, Jr., never stays still. With his blond hair matted down from sweat and his cheeks red from his last sprint across SSM Cardinal Glennon’s ACC lobby, it’s hard believe Mark spent the first three months of his life in Cardinal Glennon’s NICU. He was born with a meconium perforation, an intestinal obstruction caused by mucus build up in his bowels, and a red flag for cystic fibrosis. When an ultrasound early in Andria Leezy’s pregnancy showed the meconium perforation, Andria and her husband, Mark Leezy, Sr., were tested and found to be carriers of cystic fibrosis. But it wasn’t until Mark Jr. was born that it was confirmed he had the chronic lung disease. “I guess we are one of the lucky ones because we’ve known and been able to treat him early,” Andria says. “Some parents don’t find out until their kids are much older.” Though a life-threatening disease, cystic fibrosis can go misdiagnosed as chronic cough, asthma or pneumonia, thus going untreated. However, as of December 2009, all states are required to perform newborn screenings for cystic fibrosis, as early detection can greatly improve a child’s quality of life. An infant with a positive screening should be immediately referred to a Cystic Fibrosis Foundation accredited center like Cardinal Glennon. However, the threshold for testing older children should remain low as infants can be missed on the newborn screen. Kevin Powell, M.D., exams cystic fibrosis inpatient Alando Harris, 15. Through the leadership of Anthony Rejent, M.D., Cardinal Glennon has been at the forefront of quality improvements, such as infant screenings, for the last 40 years. In 2004, Cardinal Glennon was one of the first centers to initiate quality improvement efforts for the delivery of care and processes. “I want to continue the impressive quality efforts initiated under Dr. Rejent’s leadership through an ongoing review of our patient registry data and combining that with care recommendations put forward by the Cystic Fibrosis Foundation,” says Blake Noyes, M.D., who became the director of the Cystic Fibrosis Center after Dr. Rejent’s retirement in the summer of 2009. But beyond delivery and processes, is the care provided by Cardinal Glennon’s pulmonologists. Alando Harris, 15, has spent several days and nights at Cardinal Glennon battling illness due to the condition. He also suffers from cystic fibrosis related diabetes mellitus. Alando has worked with all of Cardinal Glennon’s pulmonologists including Dr. Noyes, Dr. Rejent and Dr. Gary Albers. “Dr. Albers always tries to make Alando laugh because he is so quiet,” Alando’s mother Tanya Bridges said. “Somehow, Dr. Albers succeeds with one of his silly jokes.” And while Bridges appreciates the work of the physicians, nurses and staff, it seems the care givers are just as touched by the effort of the patients and families they care for. Judy Brussatti, RN, CPNP, shows Mark Leezy, Jr., 18 months, a book about breathing during his visit to the Cardinal Glennon Cystic Fibrosis Center. “You become so involved with the whole family,” Judy Brusatti, RN, CPNP says. “I stay in this because the diagnosis and treatment are challenging, but also because caring for these children has made me a better nurse, a better person and a better parent. They are truly inspiring.” 11
Q&A Blake Noyes, M.D. Division Director of Pulmonary Medicine 12 Q: How do the years of experience of the faculty in your division affect the care you are able to provide A: Within the division, there is a collective experience of more than 150 years of taking care of patients with pulmonary disorders, so there is little that the pulmonary physicians have not encountered in their careers. The faculty also routinely collaborate on the approach and care of patients with complicated respiratory disorders, which provides each patient with a broad range of experiences. Finally, the division has had terrific stability over the years with our nursing, respiratory therapy and social services staff, which provides a tremendous amount of continuity for the patients and families. Q: Why did you choose to specialize in pediatric pulmonary medicine A: I was always drawn to patients with cystic fibrosis and always admired their resolute determination and courage in the face of a disease which, at the time, was often fatal before adulthood. The opportunity to follow patients and families over a long time was always appealing to me as well. Q: What is the most difficult part of your job A: Without a doubt, experiencing the death of a child from a respiratory disorder. The impact on the parents and extended family members and the loss of the tremendous potential all children have is always extraordinarily difficult. Making a diagnosis of cystic fibrosis and giving that news to the parents is always emotionally challenging since the effect on family dynamics, lifestyle and child rearing can be so devastating. To reach DR. Noyes Please Call: (314) 268-6439.
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Spring 2010 - SSM Cardinal Glennon Children's Medical Center

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