Due to advances in technology, a new need arises

[Parenting NH Administrator]

A look at a program for those living with a congenital heart defect

 

By Gerald H. Angoff, MD

 

“Susie” has been visiting a cardiologist for routine visits for as long as she can remember. When Susie was born her doctors quickly recognized she had congenital heart disease, a heart defect present at birth.

 

Suzie’s first surgery took place when she was just five months old. Today, Suzie is now a 15-year-old young woman, and as a result of her diagnosis, she at times misses school and extracurricular activities. She takes pride in being on the school’s honor roll and keeping up with her class schedule and grades. Suzie is also on the swim team and is training for her next meet.

 

At her scheduled cardiology appointments, her Mom rapidly answers the questions I ask as she has been Susie’s parent advocate and caregiver. She brings along a file overflowing with every detail of Susie’s medical history. At this time, even after a successful surgery, Susie has some heart enlargement and a leaking valve. Suzie indicates she feels fine and I ask her if she is aware of her congenital heart disease diagnosis. As she stares for a moment and shrugs her shoulders, she looks for her mother to answer.

 

Susie’s story is the celebration of treatment that is now available for those with childhood heart disease. It is also the challenge. Today, most children with her story survive previously fatal or disabling conditions, and successfully enter into their adult years healthy and well.

 

Fifty years ago only 25 percent of infants with complex cardiac defects would survive beyond their first year of life. Now, 95 percent survive to reach adulthood. Approximately 8 in 1,000 newborn children have a heart defect, which today results in more than a million adults living with congenital heart disease. Sadly, the number continues to increase by 5 percent each year. In the next decade, almost one in 150 young adults will have some form of congenital heart disease. Caring for these adults has become a new medical specialty.

 

At Dartmouth-Hitchcock, the Adult Congenital Heart Disease Program is the only program in the state designed to specifically address the unique health care needs of adult patients diagnosed with congenital heart disease. The goal is to provide seamless continuity of care throughout their years, helping to advance a patient’s health and preserve their lives. The program bridges pediatric and adult cardiac care, along with physicians trained and experienced in both patient populations.

 

For Suzie, her doctors have been pediatricians, whom will not see patients beyond the age of 18. The ACHD Program allows her to transition to an adult provider, who has a complete understanding of her care specific healthcare needs. Suzie’s heart defect has been treated but not “cured.” Suzie will need continued evaluation for late complications arising from her diagnosis. Suzie will also need guidance in becoming her own advocate, and to understand her medical history and diagnosis.

 

Fortunately, there is help for Susie, her family and the many like her. The cardiology community is focusing on the transition of care from pediatric to adult medicine for those with childhood heart disease. A number of professional organizations have developed programs to guide patients, families and physicians through this transition by increasing awareness and providing the knowledge and education necessary for lifelong care.

 

Patients should know their history and should seek adult congenital heart disease providers who can offer skilled care specific to their condition.

 

Gerald H. Angoff, MD is a pediatric cardiologist at the Children’s Hospital at Dartmouth-Hitchcock (CHaD) Manchester. For more information, go to Dartmouth-Hitchcock.org or CHaDkids.org