Congenital Heart Disease and Adolescence

Adolescent & Adult Congenital Heart Disease (ACHD) Program
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We understand that having children is a big part of many women's lives. Our Program provides comprehensive care for women with adult congenital heart disease to ensure a safe pregnancy and delivery for both mom and baby. Our team of high-risk obstetricians, maternal fetal medicine experts, anesthesiologists and geneticists works together to develop a care plan for each woman so she can deliver safely.

We also work closely with each woman to honor her preferences for giving birth. The genetics of congenital heart disease are complex and variable, but our experts can help both women and men living with congenital heart disease manage genetic conditions, as well as plan for a family. Genetic assessments can help determine whether congenital heart disease will occur again in other family members and evaluate the need for further family screening. Through our Heart Institute, we provide specialized care for children with genetic forms of cardiovascular disease.

Our ACHD Program works with these experts to continue care into adulthood for patients with conditions such as:. Learn about genetic syndromes linked to heart defects in children.

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Depending on each individual's unique needs, you may visit Children's Colorado or University of Colorado Hospital for appointments, procedures or surgeries. Our team will guide you to ensure you know where to go for care and to ensure a smooth transition from a pediatric to an adult setting when the time is right. We are available to answer your questions and recommend next steps for cardiac care. In most cases, your doctor will need to send a referral before you can be seen through our Program. For questions and appointments, please contact us:.

Born with a congenital heart defect, Chris Dini now works as a firefighter in Fort Collins. Joseph Kay, MD, wants more teens and adults with congenital heart disease to know they need specialized care as they age. Spencer Rice, a captain at the Poudre Fire Authority in Fort Collins, brought his daughter to a specialist for a heart murmur.

Watch the story of a dad who wanted to help other parents make one of the most important choices of their life. David Kasnic started the Pediatric Congenital Heart Association as a resource to help parents make informed decisions about their child's care. Contact Us: Refer a Patient. Facebook Twitter LinkedIn Print. Experts from two leading hospitals working together Our Program is made up of a group of heart doctors specifically trained in adult congenital heart disease who care for patients at both Children's Colorado and the University of Colorado Hospital UCHealth , both located on the Anschutz Medical Campus.

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Our ACHD specialists and team members Our multidisciplinary team is made up of specialists from numerous fields, including: ACHD specialists, congenital heart surgeons, heart imaging specialists, electrophysiologists, high-risk obstetricians, geneticists, psychologists, nurses and social workers. Our dedication to quality, safety and transparency We are committed to improving the quality of care for all patients with adult congenital heart disease, both within our program and across the nation.

See why our outcomes make us one of the top heart hospitals Treating heart problems in adults with CHD Adults with congenital heart disease need continued monitoring throughout their lifetime. Minimally-invasive procedures for ACHD patients. Some of the most common interventional procedures we perform for patients with ACHD include: Atrial septal defect ASD closure Patent ductus arteriosus PDA closure Patent foramen ovale PFO closure Coarctation of the aorta angioplasty and stent implantation Complex single ventricle and Fontan interventions Pulmonary artery stenting and angioplasty Valvuloplasty and interventional or hybrid valve replacement Transcatheter pulmonary valve implantation Transcatheter tricuspid valve implantation.

Adult congenital cardiac surgery. Adult congenital cardiology and electrophysiology. Our team works with specialized electrophysiologists to provide comprehensive care for heart rhythm issues, including: Atrial fibrillation Atrial flutter Supraventricular tachycardia Ventricular tachycardia Sudden cardiac death Heart block and other slow heart rhythms.

Please call for more information about these clinics. Thus, the parents may understand correctly the objective extent of the problem, but the subjective extent, as the children perceive, is the main source of information. However, assessment of both parents and children is the one that provides the complete picture of the situation, and the one that the health professionals require in order to plan individualized nursing intervention programs [ 9 , 19 - 22 ]. Numerous factors may affect health-related quality of life in children with congenital heart disease accordingly to the stage of their growth.

For example, during infancy, children are totally dependent on their parents, while as they are entering childhood, they have different needs such as relationships with other children, obtaining independence, knowledge, etc. Similarly, the features of their personality, which determine the degree of adaptation to the disease and the improvement of their quality of life, should be thoroughly considered [ 9 , 23 ].

According to the literature, the main factors affecting quality of life in children with congenital heart disease are the following:. The predominant factor that is significantly associated with the quality of life is the delay in physical growth regarding the height and the weight, which varies depending on the type and severity of the disease. Children with cyanotic congenital heart disease have the more pronounced delay in physical growth, which is visible from a very young age [ 9 , 23 , 24 ].

The change in the body image in both the pre-operative and post-operative period is the main problem experienced by children with congenital heart disease at all stages of physical growth. Post-operatively, the change in body image characterized by the large incision in the chest, is in most cases a "stigma" that reveals the disease, and gives rise to comments or questions in the child's environment, especially at the school. As a result, children become more introvert or isolated from the others for the reason that they feel shame and guilt about their body image.

Taking for granted that they do not have the capacity to cope with the change in their body image, they often need psychological support by the family or a specialist [ 9 ]. Children with congenital heart disease experience anxiety and depression due to the frequent re-hospitalization, the daily medication and the limitations imposed by the disease. In the majority of cases, depression is under recognized, either because health professionals consider it inevitable or because children are not able to seek help.

On the contrary, patients with complex heart diseases and those who are at the end-stage tend to express anxiety and depression, as the fear of imminent death is quite strong [ 25 ]. Poor quality of life is often attributed to the lack of social acceptance, especially in the school environment. More in detail, the physical impairment that these patients experience make them unable to fulfill their duties. As a result, they usually have to refrain from activities they used to enjoy before the onset of the disease, thus feeling loneliness, rejection, and social isolation, which make social integration even more difficult [ 9 , 24 , 26 , 27 ].

School performance is also very often impaired and the children usually fall behind the progress of their healthy schoolmates due to the fact that they have a long treatment process involving frequent hospital admissions and they are likely to have a prolonged absence from school.

Moreover, the disease itself limits their learning abilities. According to the literature, the most common difficulty is the target committal, such as at the perception and the accomplishment of a task that has been assigned to them, the organization of the time and the way to accomplish the task, as well as the ability to remember which steps are required for the acquisition of the task. Relevant research has shown that the cognitive impairment experienced by children with congenital heart diseases is associated with cyanosis or the severity of the disease [ 9 , 24 , 26 , 27 ].

However, scientific data support that even patients with moderate heart disease should not reduce their physical activities. On the contrary, pediatric patients with severe heart disease and fatigue tend to decrease their activities themselves.

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The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer. MACMAHON B, MCKEOWN T, RECORD RG. The incidence and life expectation of children with congenital heart disease. Br Heart J. Apr;15(2)–

Transportation to school with various means can help them maintain sufficient physical energy for activities at school and in the class. Awareness of the teachers should be of high priority throughout the school year [ 6 , 27 , 28 ]. It is well established that family is a dynamic team of inter-dependent members which are in constant interaction. One of the most common mistakes that the parents, and especially the mother, make, is to pass their anxiety to their child. Many studies have emphasized the importance of the 'time' factor because the surgical treatment of these anatomic abnormalities is preferable before the deterioration in cardiac function or the appearance of complications in the respiratory or circulatory system.

Parents with low educational and income level tend to have difficulties in recognizing that their children need advisory support, or they ignore its importance and consequently, their children show symptoms of anxiety, depression or even aggressive behavior towards the environment. Given the fact that the disease demands frequent visits to the hospital and hospitalization cost, it is understandable that family faces financial problems which may often destroy the relationship between the parents [ 9 , 28 , 29 ].

Finally, maintenance of an overall good health including a balanced diet, prevention of anemia, and full vaccination against the common diseases are factors that contribute positively to the improvement of the quality of life. In particular, bacterial infections should be treated immediately, and precaution measurements against bacterial endocarditis during dental work, before an examination in urinary tract, and in lower gastrointestinal tract should always be taken.

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Treatment of anemia is very important, especially in patients with cyanosis, for the improvement of physical performance, their general health condition, and therefore their quality of life. Patients with cyanosis should be aware of possible dehydration. High altitude and sudden changes in environmental temperature should be avoided. Patients with severe congenital heart disease or with a history of cardiac rhythm disorders should be carefully monitored during anesthesia, even during routine surgeries [ 6 ]. This acquired knowledge combined with the clinical experience contributes to improvement in the quality of life in children with congestive heart failure, their psycho-emotional development and their social integration.

All Published work is licensed under a Creative Commons Attribution 4. Visit for more related articles at Health Science Journal. Keywords quality of life - congenital heart diseases- factors Introduction Congenital heart diseases are the second leading cause of death in infancy and childhood, as well as the only cause of heart disease in the pediatric population in developing countries. Factors affecting the quality of life of children with congenital heart disease Numerous factors may affect health-related quality of life in children with congenital heart disease accordingly to the stage of their growth.

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According to the literature, the main factors affecting quality of life in children with congenital heart disease are the following: The predominant factor that is significantly associated with the quality of life is the delay in physical growth regarding the height and the weight, which varies depending on the type and severity of the disease.

Brennan P. Congenital heart malformations: aetiology and associations. Semin Neonatol. Fasnacht MS. Fetal and genetic aspects of congenital heart disease. Ther Umsch. Bajolle F. Genetics and embryological mechanisms of congenital heart diseases. Arch Cardiovasc Dis. Jacobs JP. Analysis of outcomes for congenital cardiac disease: can we do better? Cardiol Young. Nelson W. Webb G. Schlarmann JG.

The use of health-related quality of life HRQOL in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the literature. BMC Public Health. Nakou S. Measurement of quality of life in the health care field.

Applications in child birth.

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Archives of Hellenic Medicine. Ransom J. The genetics of cardiac birth defects. Semin Cell Dev Biol. Polikandtioti M. Quality of life in patients with congestive heart failure. Borghi A. The grown-up congenital cardiac patient. J Cardiovasc Med Hagerstown. Hunter S. Congenital heart disease in adolescence.