Today many children born with heart defects can live a long, full life because of advancements in medicine. But adults with CHD must continue to receive care because they are still at risk for developing complications related to their heart defect and the surgeries they have had.

Since parents have always managed their healthcare, it is easy for children with CHD to simply stop receiving care as they move into adulthood. That’s why there is a process to prepare children with CHD for the next, independent steps in their journey – including learning how and where to get medical care as an adult, and why it’s important.

It is essential that adults with CHD receive specialized care throughout their lifetime to stay healthy and reduce problems that can occur. As your child becomes a young adult, you have an important role in helping your child transition their medical care from their pediatric cardiologist to an adult congenital heart disease (ACHD) specialist.

During the care transition process, you will work with primary caregivers and medical professionals to help your child understand their heart condition, any procedures and surgeries they have had, medications they are taking and why, and what they need to know for their future so they can begin making decisions regarding their health.

Depending on your heart center, the care transition process usually begins during the teenage years. Your child’s cardiologist will often help begin the transition process, and sometimes other care providers are involved such as social workers or case managers. Working together, you will find a new care team that is qualified to treat issues that can occur in adults with CHD and can manage your child’s heart condition as they get older.

Basic Steps in Your Child’s Care Transition

  • 1. Know when to start care transition

    The age of transferring care to an ACHD physician usually occurs between ages 18 and 21. The exact age depends on your heart center or institution and also how ready your child is to transition. Allowing enough time for the transition process can help support a smooth transfer of care, prevent a lapse in care, and ensure that your questions and your child’s questions are answered.

  • 2. Ask if your hospital supports care transition

    Because the teenage and young adult years can be a time of many changes – graduating from high school, starting a job, going to college, or moving out of the house – many cardiology programs have a care transition program that helps young adults successfully transfer their care to an ACHD specialist and become more comfortable taking ownership of their care.

  • 3. Find out where your child can get ACHD care

    Depending on the hospital or cardiology program, as children become adults they may be able to see an ACHD specialist in a different clinic at the same hospital you and your child have been going to up to this point. Sometimes an ACHD program may have a clinic located in a different location close to you. If not, your child may need to transfer to an “adult” hospital that has an ACHD program.

  • 4. Meet the new adult care team

    Your child often will have an opportunity to meet the new ACHD physician and their team before officially transferring care to them. During these meetings and through the transition period, your child will gradually become more knowledgeable about their healthcare needs and improve their understanding of the treatment plan. As they take more responsibility, their willingness to follow through with the treatment plan and regular checkups generally increases.

PARENT TIPThe Care Transition Can Be Emotional for Everyone

It is common for both parents and children to feel some anxiety about changing cardiologists. Your family has confidence in the physician your child may have seen from birth or even before birth, and it will naturally take time to develop the same trust in a new physician. Over time, most patients are able to build a good relationship with their new physician. If you’re unhappy after a reasonable adjustment period, speak with your care team about other options.

It can be an emotional time for any parent when their child becomes a young adult, but it may be especially hard when your child has a serious health condition and you have been responsible for managing their care for so long. Now you must learn to “let go” on many fronts. The best thing you can do is support your child in becoming independent, encourage them to see their physician regularly, be sure they understand the importance of care, and tell them you are always a resource for them if they have questions.

Why Is It Important to Support My Child’s Care Transition?

  • Your teen or young adult can better understand their health conditions now that they are older
  • It allows your child time to develop a habit of seeking medical care independently after you can no longer manage their appointments, prescriptions, etc.
  • This is an opportunity for both of you to meet the adult cardiology team and become comfortable with them and their clinic before your child stops seeing the pediatric cardiologist
  • When your child learns more about their medications, it increases the likelihood they will follow their medication plan without supervision
  • You can help your child enroll in an adult insurance plan or Medicaid to be sure there is no interruption in their coverage or care
  • Becoming an established patient of an ACHD physician reduces the chances your child will fall out of care – which can have poor effects on their health

What Will We Talk About During the Care Transition?

Health History
An overview of your child’s heart condition and any surgeries they have had

Your child’s medications, the reason for each medication, potential side effects, how to get refills, and what happens if they don’t take the medication

Additional Surgeries
The potential need for additional surgeries or medical procedures in the future

Ongoing Care
How important it is for your child to stay in care, how often they should get care, and the importance of getting specialized ACHD care

Emergency Care
When to seek emergency care and how, including the best place for your child to get emergency care as an adult

Getting Medical Help and Information
How to contact the new adult care team, and how important it is for your child to ask questions until they have and understand all the information they need

Family Planning
Family planning, contraception, and genetic considerations

Mental Health and Wellbeing
How to get emotional support and strategies to stay healthy

How to navigate health insurance and manage healthcare costs

Getting a Job
Vocational and career plans

Legal Issues
Legal issues such as how to set up a guardianship or healthcare proxy