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Adult Congenital Heart Disease

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Due to improved medical and surgical therapies, more than 90% of children born with congenital heart disease (CHD) are now reaching adulthood. A smooth transfer from pediatric to adult centered, coordinated and integrated care is essential.

A brief history of ACHD care in America: 

Dr. Joseph K. Perloff was the "founding father" of ACHD. He first published in the early 1970s about the emerging need for ACHD care facilities. There were almost no ACHD clinics in the United States at that time. In 1990, Dr. Perloff convened the 22nd Bethesda Conference of the American College of Cardiology (ACC). He brought together interested people from centers across the United States. This brought ACHD to the table as something that the healthcare community needed to address. Despite this, not much progress was made during the 1990s. In 2000, the ACC convened its 32nd Bethesda Conference, again with a focus on ACHD. This meeting was to prepare a roadmap for the development of a strong ACHD care system in the United States. Many specific recommendations were made.

Medical Care for adult patients with Congenital Heart Diseases

  1. Heart rhythm, valve disorders, and heart failure are often lifetime challenges for in adult patients with CHD;
  2. Birth control methods for women with CHD: There are approximately 500,000 adult women living with CHD in the United States. Like all women, they need to be able to plan if and when to have children. The risk of pregnancy for women with CHD ranges widely. For some women their risk is no different from that of the general population. For others it will carry up to a 50% chance of death. For these women birth control is more than just a method to conveniently space babies. It may prevent a life-threatening pregnancy.
  3. Last but not least: Obtaining and storing your childhood cardiac care records: For patients with CHD, the detailed information about their heart defects, surgical procedures, and tests are critically important for accurate treatment by health care professionals. The majority of older records are xeroxed or faded carbon copies stored and locked away hospital or doctors' filing cabinets. These records are subject to damage, or loss. Some of my patients' childhood medical records are unobtainable due to their pediatrician retiring, the hospital closing, or the records just plain being lost or misfiled. I often advise my patients to obtain records from their pediatric cardiologist and create digital images. Carrying a summary of your critical medical records may be lifesaving in a medical emergency. A copy of your latest surgery report, a list of all medications and dosages, and your most recent electrocardiogram are critical information for an ER doctor. The summary can easily be stored on a USB flash drive and kept on a keychain or in a purse.

Adult Congenital Heart Disease

Puxiao Cen, MD FACC