Young heart surgery survivor thrives

February marks the national celebration of American Heart Month and volunteers around the country and across the suburbs are teaming up to raise awareness in a variety of ways.

American Heart Association experts say cardiovascular disease is often viewed as a problem facing adults, but it also extracts a terrible toll on babies, children, and their families.

Small hearts, big challenges

Ryan and Aleisha Jaeger of Wheaton say they know only too well how even the tiniest of hearts can face big challenges.

Their 3-year-old daughter, Charlotte, was born with a complete atrioventricular canal defect — a large hole in the center of her heart requiring surgical repair.

Located in the area of the heart where the upper chambers join the lower chambers, the defect allows extra blood to pass from the left chambers to the right, and eventually into lung arteries. The extra blood being pumped into these lung arteries make both heart and lungs work harder, become congested and can lead to life-threatening vessel damage.

Baby Charlotte's case was even more unique because her ability to survive prior to receiving a full heart repair was less predictable since she did not have a genetic condition in which the congenital heart defect is more common.

“Born prematurely and weighing 5 pounds, 7 ounces, Charlotte spent the majority of her first months in the hospital's neonatal intensive care unit,” says Ryan Jaeger, Charlotte's dad and a data warehouse/business intelligence developer at Edward Hospital & Health Services, Naperville. “We learned of her cardiac defect while she was in the NICU. By her fourth day at home (age 11 days), we watched Charlotte turn from blue to gray in color, her blood oxygen saturation levels dropped to the low 90s, she became very lethargic, and stopped eating.”

According to statistics, Charlotte is one of the 32,000 children born each year with a congenital heart defect, and among the 25 percent of those requiring invasive treatment in the first year of life.

Experts say at least eight in every 1,000 babies have a heart defect — some so mild there are no outward symptoms and others so severe that the newborn becomes ill shortly after birth. In yet other cases, signs and symptoms appear only later in childhood.

Rather uncommon and often without a specific cause, experts have identified at least 17 different defects ranging from simple to complex malformations. Cardiac defects are the most common birth defect and the leading cause of death in the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers.

Experts say there is reason for hope. Thanks in part of medical research, most babies with congenital heart defects now survive to adulthood.

An estimated 1.7 million American adults and children alive today have some form of congenital heart defect. About half are under the age of 25.

One preventive pulmonary artery band surgery and open heart surgical repair at Hope Children's Hospital, Oak Lawn, closed the large hole in Charlotte's heart, but the youngster continued to face significant medical hurdles as doctors worked to counter complications due to a lack of oxygen to various organs.

A portion of the baby's colon was removed and a special temporary feeding tube was inserted to provide nutrition and calories. Early intervention services were ordered and included intensive support and therapy to regain feeding skills; counter sensory processing challenges and developmental delay; and to help Charlotte learn to communicate through sign language and with the assistance of iPad technology.

“Early intervention is the key,” explains Sharon Pike, parent liaison and a member of the NICU follow-up clinic for early intervention at Easter Seals DuPage & Fox Valley, an accredited outpatient pediatric rehabilitation center with locations in Villa Park, Naperville and Elgin.

“Many children have special health care needs and could benefit from screening, services, and early intervention programs — using therapies that work to strengthen children's physical, social, emotional, and intellectual abilities from infancy.”

Family support also is vital, according to Charlotte's dad who says online support led him to understand his family was not alone. At the prompting of Charlotte's feeding therapist, the Jaegers also started a blog to help tell their story and provide support to others who may face similar challenges.

In her professional work as operations manager of construction for Epstein, Charlotte's mom found a special Real Estate Takes Heart 5K that raises awareness and funds for congenital heart defect research and treatment.

The organization helps bring awareness about heart disease at all ages through an annual 5K run. Additionally she started an office campaign to collect pop tabs for Ronald McDonald Children's Charities, another avenue for support that families of ill children often need.

Little hats, big hearts

Two years ago, Ryan Jaeger's participation in a special American Heart Association 5K race led to learning of a new Little Hats, Big Hearts campaign designed to raise awareness of heart disease, the No. 1 killer of Americans, and congenital heart defects, the most common type of birth defect in the country.

The campaign is being embraced by hospitals around the country and across the suburbs this month and thousands of newborns receive adorable hand-knit red caps and a personal healthy heart message for their parents.

Hand-knit by volunteers, each cap is unique and delivered with a special heart disease prevention message for new moms and dads. According to American Heart Association program coordinators, volunteer knitters are on track to deliver 10,000 hats this month.

“Heart disease is the No. 1 killer of Americans, including women,” says Cindy Hartwig, Women's Health and Professional Practice executive director at Advocate Lutheran General Hospital, Park Ridge. “Our partnership with the AHA Little Hats, Big Hearts campaign was a great success last year and we are anticipating a repeat performance.”

With 4,400 babies born at the hospital each year, making it the second busiest baby birth center in the state, Hartwig says she is confident nursing personnel will have need of nearly 350 hats during the month of February. The partnership this year will expand to other select Advocate hospitals throughout the suburbs.

“Babies' heads are typically the largest uncovered area of skin and the place where heat can escape the body quickly,” she explains. “While the hats are adorable and (the program provides) moms with important information on blood pressure control, weight management, exercise, nutrition and more, the caps also serve a practical purpose keeping babies snugly warm.”

This year's Little Hats, Big Hearts campaign also will expand to include some 600 babies expected to be born at Elmhurst Memorial Hospital and Edward Hospital, thanks to Jaeger's efforts to expand program partnership. Babies born at Ann & Robert Lurie Children's Hospital of Chicago, at Cadence Central DuPage Hospital, Winfield, and Delnor Hospital, Geneva, both a part of Northwestern Medicine, also will receive hats.

“Even my mother is busy knitting caps,” says Jaeger. “At last count, I believe she has completed 107.”

To learn more

For additional information on congenital heart defects, research, advocacy and public policy initiatives, contact the American Heart Association at (312) 346-4675 or visit the association online at www.heart.org/congenitalheartdefects.