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College with Congenital Heart Disease: Information for Parents

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More students with congenital heart defects are entering college than ever before. In fact, there are close to 3 million people in the U.S. with congenital heart disease (CHD)―more than half of whom are adults. While these numbers are encouraging, the transition is not always an easy one for parents.

While a CHD is never "cured," there are plenty of opportunities to thrive in college with the disease if your child remains healthy and stays in medical care.

Getting Prepared:

Like all parents, you may feel both anxiety and excitement when it comes time to help your child prepare for college. As parents of a child with CHD, however, these feelings may be more pronounced because of your child's health issues.

  • Make sure your child knows his or her congenital heart history―including past surgeries and/or catheterization procedures that he or she had when younger.

  • Make an appointment for your child (or have them make the appointment themselves) to see his or her cardiologist at least 6 months before leaving for college. Make sure all necessary tests have been done (EKG, echocardiogram, rhythm monitor, pacemaker check, etc.). While there, get copies of these tests for your child to take to college.

  • Work with your child to identify an adult congenital cardiologist near his or her college. This can be discussed with his or her hometown cardiologist or by looking at the Adult Congenital Heart Disease Clinic Directory. Hopefully, the discussion about transitioning to adult congenital cardiology has been an ongoing conversation with your child's pediatric cardiologist.

  • Discuss with your child how campus residential and campus disability services can make their college experience better. By law, institutions must provide reasonable accommodations for qualified students. (The rules are slightly different for institutions that receive federal funds versus those that do not, but all are required to provide equal access to public accommodations). For example, if your child's dorm doesn't have an elevator, residential services can help get a room on a lower level. Does your child need more time on exams? The campus disability services office can help with that, too.

Arriving at College:

Students may turn to college health providers for medical care. It is important that college health providers be aware of your child's health history and CHD from the beginning.

  • Have your child introduce him or herself to the student health clinic and explain his or her condition and the possible symptoms and signs associated with complications of CHD. If necessary, contact the health clinic yourself and add additional information. Such information can help providers facilitate appropriate care quickly.

  • If your child is taking medication, make sure he or she knows the name of the medication, how is it taken, side effects, and whether any foods or drinks should be restricted (e.g., alcohol).  

  • Help your child Identify the nearby pharmacy so medications can be easily refilled. Suddenly stopping medications can have serious health consequences.

  • Remind your child of the importance of letting his or her roommates and resident advisor (RA) know about his or her condition and any instructions in case of an emergency. It is also important for others to know about any needed emergency medications―and where they can be found. If your child's condition is particularly complex or challenging, consider talking with or meeting with a health center staff member before the academic year starts.

  • Have your child wear a medical ID bracelet (pictured above) and keep medical ID information on his or her iPhone or Android app in case of an emergency.

AEDs on Campus

If your child has a pacemaker or a defibrillator, keeping up with regular remote checks is important. Also, be sure his or her RA and roommates know the location of the closest AED device and how to use it.

Attending College with CHD:

College can be demanding for anyone but attending college with CHD can present its own challenges. There will be opportunities that require your child to make good decisions. Reminding your child of these considerations is important.

Here are considerations to keep in mind when a child with CHD is away at school:

  • Alcohol, tobacco and marijuana may cause irregular heart rhythms and other cardiac complications.

  • Some CHD patients may have exercise restrictions.

  • Some forms of contraception can be dangerous for some female CHD patients.

  • Patients with CHD are at a higher risk of neurodevelopmental disabilities, which can impact learning.

  • Caffeine can promote arrhythmias. Energy drinks contain large amounts of caffeine and are best avoided.

  • Don't ignore new or worsening symptoms, including fevers and chills. Usually, earlier diagnosis and treatment are best.

Case Study Example

A case study published in Journal of American College Health in April 2018 tells the story of a college student who visited the campus health clinic due to persistent headaches. As it turns out, the headaches were a result of high blood pressure associated with complications from the patient's CHD. In addition to the patient's story, the authors of the case study discuss some of the unique challenges that college health providers may face when caring for students with CHD.

Additional Information & Resources:


Additional information regarding congenital heart defects and lifelong cardiac care is available at the CHPHC website, www.chphc.org. The CHPHC is housed at the American Academy of Pediatrics through a grant from the Centers for Disease Control and Prevention in an effort to utilize public health principles to affect change for those whose lives are impacted by a CHD. Organizational members of the Consortium represent the voice of providers, patients, families, clinicians and researchers.


Last Updated
9/25/2018
Source
Congenital Heart Public Health Consortium (CHPHC)
The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.
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