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Teens with Heart Defects: Romance and Sex

Ages 13 - 17 Years

Like all teens, teens with heart defects (CHDs) are usually very interested in sex and romantic relationships. Romantic relationships are a new type of social relationship that they need to understand. Caregivers can help them to be safe and informed, and to make choices that align with their values.

2 min read

In this section

Confusion and Curiousity Prioritizing Safety An Ongoing Process, A Shared Effort

Confusion and Curiousity

Many teens are confused by romantic and sexual feelings. They may need help understanding:

what they are feeling and why
how they may show their feelings
how they may not show their feelings
how to recognize what others feel

Sometimes people think teens with disabilities do not have sexual or romantic feelings. This is not true. Teens with physical and mental disabilities almost always develop sexual and romantic feelings.

Teens with heart defects may have more trouble understanding romantic and sexual relationships than other teens.

Prioritizing Safety

Every family has their own rules for sex and romance. Families should teach their own values. However, all teens need to stay safe in their relationships.

To stay safe in relationships, all teens should learn:

the difference between friendship and romance
what it means to give consent
what kind of touch is usually OK
what kind of touch is never OK without consent
what kind of talk is usually OK
what kind of talk is never OK without consent
how to say “no” to unwanted touch or attention
how to ask for consent in a way that is safe for others
how to monitor consent, and make sure if consent status changes
how to withdraw consent
how to ask for help if they do not feel safe or do not understand a social situation

Many teens do not have sex. Other teens do have sex. In order to stay safe, teens who are having sex should learn:

how to prevent disease
how to prevent pregnancy
whether their heart disease makes sex or pregnancy unsafe

A cardiologist who specializes in congenital heart defects can help teens and their families to understand any safety concerns surrounding sex and/or pregnancy.

An Ongoing Process, A Shared Effort

Families should not worry that they have to teach their young person about sex and romance all at once, or that they need to do it alone. Conversations about sex and romance can take place naturally over time.

Families can get support in educating their children about sex and romance. Depending on their needs and goals, they may get support from their child's school, from a psychologist or other therapist, from books, or from a developmental-behavior pediatrician. Families should ask for help if they feel unsure or overwhelmed in trying to teach their children about sex and romance.

This content was reviewed by a psychologist at Boston Children's Hospital .

Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their local care team.

References

Burström, Å., Mora, M. A., Sparud-Lundin, C., Moons, P., & Bratt, E. L. (2022). Adolescents with congenital heart disease: what do they know about reproductive health and risks?. Journal of Cardiovascular Nursing, 37(6), E172-E180.https://journals.lww.com/jcnjournal/fulltext/2022/11000/adolescents_with_congenital_heart_disease__what_do.12.aspx

Fry, K. M., Gerhardt, C. A., Ash, J., Zaidi, A. N., Garg, V., McBride, K. L., & Fitzgerald-Butt, S. M. (2015). Lifetime prevalence of sexual intercourse and contraception use at last sex among adolescents and young adults with congenital heart disease. Journal of Adolescent Health, 56(4), 396-401.https://www.sciencedirect.com/science/article/pii/S1054139X15000063?casa_token=4fK7AUzVDY4AAAAA:milsF6EzCohjdQK5HP7qg0Nktvx5RsnyIvGBeh-Rks1EdoQsi7SPOUrGjx_pwaHQJ8-5V6PY

Hargrove, A., Penny, D. J., & Sawyer, S. M. (2005). Sexual and reproductive health in young people with congenital heart disease: a systematic review of the literature. Pediatric cardiology, 26, 805-811.https://link.springer.com/article/10.1007/s00246-005-0950-3

Kwon, S. J., & Im, Y. M. (2021). Sexual health knowledge and needs among young adults with congenital heart disease. Plos one, 16(5), e0251155./Kwon, S. J., & Im, Y. M. (2021). Sexual health knowledge and needs among young adults with congenital heart disease. Plos one, 16(5), e0251155.

Loomba, R. S., Aggarwal, S., & Pelech, A. N. (2015). Addressing sexual health in congenital heart disease: when being the same isn't the same. Congenital Heart Disease, 10(1), 30-35.https://onlinelibrary.wiley.com/doi/abs/10.1111/chd.12168?casa_token=C52BfK01ZZIAAAAA%3AIT8WgcagPW6PHhYJTtVK9ZTvuLX-4I9G_Kw4ioFy9W1bsxygsU8oDErgct_qSvwnqRMxzqVtENGI

Reid, G. J., Siu, S. C., McCrindle, B. W., Irvine, M. J., & Webb, G. D. (2008). Sexual behavior and reproductive concerns among adolescents and young adults with congenital heart disease. International journal of cardiology, 125(3), 332-338.https://www.sciencedirect.com/science/article/pii/S0167527307005311?casa_token=3Hj3XAUQsBQAAAAA:Lm-hZ6KnXUK47MwetQIjEjcBlTOghhx_9TLKmZth46RJWRY7r0I2h0dxvMeYp0rpWweRwlzM

Uzark, K., VonBargen-Mazza, P., & Messiter, E. (1989). Health education needs of adolescents with congenital heart disease. Journal of Pediatric Health Care, 3(3), 137-143.https://www.sciencedirect.com/science/article/abs/pii/0891524589900631

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