Congenital Heart Disease (CHD) is a diagnosis that often causes confusion, concern, and fear, not only for family and patients but also for healthcare providers who are not exposed to them frequently. February is Heart Month; it is important that we take time to recognize the youngest of our heart patients, as well as those who are now adults living with Congenital Heart Disease.
CHD is the most common congenital malformation in newborns and there are great than 1 million adults now with CHD in the United States,1 which makes it important for every health care provider to know about; it requires understanding of sometimes complex physiology, a high index of suspicion, and most importantly a multidisciplinary approach to care with the patient and often parent at the center. For a review on CHD you can click here3, but below are some important things to consider:
- CHD does not always present at birth and can be missed on routine prenatal obstetric ultrasound, fetal echocardiogram, and the neonatal pulse ox screening. Fortunately, not all CHD requires surgery or intervention at all.
- General OB ultrasounds and fetal echo will likely catch major congenital heart disease, but there are some smaller lesions that are difficult to diagnose due to normal fetal circulation, which is abnormal after birth.
- The pulse ox screen was initiated in 2011 to improve detection and outcomes in critical congenital heart disease that could cause hypoxemia and a higher risk of death early on; these lesions are typically prostaglandin dependent and outcomes can be improved if addressed early on.2
- CHD is often associated with extreme clinical situations, but many infants with CHD will not present this way and may not require surgery at all. They still require follow up with a pediatric cardiologist.
- CHD is not always “cured” but often palliated, and these patients can have different hemodynamics to consider as a result.
- While many patients receive surgery to create a “normal” heart, many infants born with complex congenital heart disease will require multiple surgeries, termed palliation, that create a new way of circulation (such as the Fontan Procedure4). Altered hemodynamics(blood flow) are important to understand and it is important to know what surgeries have been performed.
- Some surgeries, while restoring normal or near-normal can still put patients at risk for long term issues that need to be followed closely such as heart failure, hypertension, valvar issues or arrhythmias.
- There are now more adults living with CHD than children.
- Thanks to advances in medicine and surgery, adults now represent the largest population of patients with CHD. While many of these patients are healthy and can live normal lives, they still need lifelong care with providers who specialize in CHD.
- It is important to encourage adolescents with CHD to learn about their diagnosis early on and take their health into their own hands. The transition to an adult congenital heart disease (ACHD) provider is something that needs to be encouraged not only by pediatric cardiologists but primary care physicians and adult cardiologists
- Most CHD patients can, and should be encouraged to, participate in a healthy lifestyle including exercise; however, this should be in discussion with a CHD provider to help provide guidance.
- Click here5 to find an ACHD specialist near you.
- CHD parents and patients are great resources of knowledge and want to be heard.
- CHD parents and patients are their best advocates and are often the most knowledgeable about their heart and what they have been through. It is important to take their complaints and concerns seriously. Do not be afraid to ask them questions and learn their history.
- CHD requires a multidisciplinary approach; CHD providers are willing to answer a call and collaborate.
- CHD patients may be at higher risk for psychological issues such as depression and anxiety related to living with chronic disease.6 They are also not free from other cardiovascular problems that are not necessarily congenital, such as coronary artery disease and stroke1, which is why collaboration amongst specialties is crucial.
- If you have a question, concern or need more help; never hesitate to reach out to your hospital or patient’s CHD specialist. We are here to help, educate and provide the best care for our patients.
CHD represent a population of heart patients that is consistently growing with continued advances in medical care. Everyone in healthcare is likely to be exposed to these patients during their career, therefore a multidisciplinary, patient-centered approach is important to continued success in the field.
- Wang, Tingting, et al. “Congenital Heart Disease and Risk of Cardiovascular Disease: A Meta‐Analysis of Cohort Studies.” Journal of the American Heart Association, 9 May 2019, ahajournals.org/doi/10.1161/JAHA.119.012030.
- Engel, Melissa S, and Lazaros K Kochilas. “Pulse Oximetry Screening: a Review of Diagnosing Critical Congenital Heart Disease in Newborns.” Medical Devices (Auckland, N.Z.), Dove Medical Press, 11 July 2016, www.ncbi.nlm.nih.gov/pmc/articles/PMC4946827/. Puri, Kriti, et al. “Congenital Heart Disease.” American Academy of Pediatrics, American Academy of Pediatrics, 1 Oct. 2017, pedsinreview.aappublications.org/content/38/10/471.
- Puri, Kriti, et al. “Congenital Heart Disease.” American Academy of Pediatrics, American Academy of Pediatrics, 1 Oct. 2017, pedsinreview.aappublications.org/content/38/10/471.
- “The Royal Children’s Hospital Melbourne.” The Royal Children’s Hospital Melbourne, rch.org.au/cardiology/parent_info/Information_for_patients_and_parents_about_the_Fontan_Operation/.
- “Adult Congenital Heart Association – Home.” ACHA, achaheart.org/.
- Areias, Maria Emília Guimarães, et al. “Long Term Psychosocial Outcomes of Congenital Heart Disease (CHD) in Adolescents and Young Adults.” Translational Pediatrics, AME Publishing Company, July 2013, www.ncbi.nlm.nih.gov/pmc/articles/PMC4728933/.
“The views, opinions and positions expressed within this blog are those of the author(s) alone and do not represent those of the American Heart Association. The accuracy, completeness and validity of any statements made within this article are not guaranteed. We accept no liability for any errors, omissions or representations. The copyright of this content belongs to the author and any liability with regards to infringement of intellectual property rights remains with them. The Early Career Voice blog is not intended to provide medical advice or treatment. Only your healthcare provider can provide that. The American Heart Association recommends that you consult your healthcare provider regarding your personal health matters. If you think you are having a heart attack, stroke or another emergency, please call 911 immediately.”
Alyssa Vermeulen, DO, FAPP, is currently in her final year of Pediatric Cardiology Fellowship at Rush University Medical Center in Chicago, IL. Her clinical interests include congenital heart disease, fetal echocardiography and and sudden cardiac arrest awareness and education. She is currently working on improving CPR/AED awareness and education in Chicago Public Schools. You can follow her tweets @AVermeulen18