14 - Year Evaluation for Kids with Heart Defects

Many teens with congenital heart defects should be evaluated before transitioning to high school, which usually happens when they are between 8th and 9th grades, and between the ages of 14 and 15.

Children should be evaluated if they have a CHD and are at high risk of neurodevelopmental disability. This usually includes kids who:

• had a heart surgery as a baby

• had or have chronic low oxygen

• had a heart transplant

• had ECMO or a VAD

• had a cardiac arrest

• had a long hospitalization as a baby for their heart disease, or for a condition secondary to their heart disease

• had a stroke or seizure

• have a brain injury

Parents can ask their cardiac neurodevelopmental team or their cardiologist if they are unsure of their teen's risk level.

Even when high-risk teens with heart defects are developing well, experts still recommend that they should have regular evaluations: 

• to monitor their development 

• to detect early signs of problems that may appear 

• to plan services 

The 14-year evaluation helps caregivers understand how their teen is progressing in school, how well their teen is doing socially and emotionally, and whether their teen requires additional interventions. It can help set up any necessary services before teens transition out of middle school and into high school, and can help families to plan for eventual transition to adulthood.

Many families live near a hospital with a cardiac neurodevelopmental program.  For these families, a local cardiac neurodevelopmental program is probably the best place for an evaluation. 

In places without a cardiac neurodevelopmental program, teens with heart defects can have a neurodevelopmental evaluation with a psychologist.  

Families should ask the psychologist if they are familiar with the development of adolescents with heart defects.  If possible, families should try to work with a psychologist who understands the common challenges faced by adolescents with heart defects. 

If they are unsure where to go, families should ask their doctor where to get a neurodevelopmental evaluation for their teenager.  

Evaluations are slightly different from hospital to hospital, and provider to provider. However, an evaluation for an adolescent usually has these steps: 

1. Referral: The parent refers their own child for an evaluation, or a doctor refers the child. 

2. Scheduling: The parent talks with the scheduler, and sets up an appointment. There might be a long waitlist, so parents should consider setting up their evaluation about 6-12 months ahead of time. 

3. Questionnaires: Before the first appointment, the evaluator may send the parents questionnaires to be completed by the parents, teachers, and/or teenager.  Parents should do their best to finish them before the appointment. If parents have questions, they can call the scheduler and ask for help. 

4. Interview: The evaluator usually starts with an interview with the parent. The interview might happen in the same appointment as the testing, or a different appointment. Sometimes the interview can be virtual, but is usually in person. 

5. Testing: The parent and child meet with the evaluator. The evaluator does activities with the child.  The evaluator may also ask the parents questions. 

    

6. Feedback: The parent meets with the provider to discuss what they learned from the testing. This appointment can happen the same day as testing, or a different day. It may happen virtually, or in person. 

    

7. Report: The provider sends the family a written report. The report includes everything they learned from the testing, plus recommendations. Families can choose to share this report with their doctor, other therapists, and local school district.   

Through the testing process, parents and teenagers should always ask if they have questions, ideas, or concerns.  

Parents know their child best. They and the child are the most important part of any evaluation team. Parents and teenagers should share their own observations about the teen's development and functioning, and ideas about what might help.

Evaluators use many tools in order to learn about the development of an adolescent. They select tools based in each person's strengths, needs, and goals. 

When assessing 14-year-olds with heart defects, evaluators often use: 

• Tests of how kids think, learn, use language, interact, remember, focus, and solve problems 

• Questionnaires for parents and kids 

• Structured conversations with the parent and teen

Parents should always feel comfortable asking questions before, during and after an evaluation.  

When choosing an evaluator, parents may want to ask questions such as: 

• What is your training in evaluation and assessment?  

• What is your experience testing teens this age? 

• What is your experience testing kids with my child’s conditions and diagnoses? 

• What tools will you use to answer the questions I have? 

• How will you adapt testing to meet the needs of my child? 

• Will I receive a report after my evaluation? What will the report cover?  

• After testing, how long will it take for me to receive the report? 

• After testing, are you available to attend meetings with my child’s school district? 

There is no right answer to these questions, but they may help families select a provider that is right for them. 

After an evaluation, parents may want to ask question such as: 

• How is my child developing as compared with other teens their age? compared to other children with his medical condition? 

• What are my child’s strengths? 

• In which areas does my child have developmental concerns? 

• Do you think my child may eventually have other developmental concerns? If Do you expect my child to grow out of any problems that you have noticed? 

• What challenges do you think my child might face in the next few years? 

• What school services, accommodations, and modifications does my child need?

• What should we be thinking of in terms of planning for transition to adulthood?

• Should my child receive Special Education or have a 504 Plan?

• What can I do at home to support my child’s development? 

• What services does my child need outside of school?

• When should my child next be evaluated? 

• What signs should I look for that my child is making expected progress? 

• What signs should I look for that my child may need to come back to see you sooner than expected? 

These questions can help families to make sense of the report, and to move forward with recommendations. Parents and teens should always keep asking questions until they are sure they understand.  

If an adolescent with a heart defect remains at high risk of a neurodevelopmental delay or disability, families should continue to work with a neurodevelopmental team into early adulthood.

Some young people should have an additional evaluation shortly before they turn 18. This evaluation can help families to plan for questions about post-secondary education, housing, transfer of medical and behavioral health care, and post-secondary services. It can also help families establish guardianship and medical proxy, if appropriate.

Families should ask their evaluator how to continue to monitor their teenager's development, and whether to schedule a further evaluation.

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.