Spring 2010 - SSM Cardinal Glennon Children's Medical Center

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.”
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