Responding to a Diagnosis

When you have a child whose development is delayed or who has chronic medical problems, not knowing the cause or not having a diagnosis can be frustrating. Once your child has a diagnosis, there will be new feelings to deal with, as well as new experiences for parents and other family members. This page aims to help parents and families with that process.

Within the Medical Home and the Portal

While the Medical Home Portal is not designed to help with making a diagnosis, it does offer resources for the steps that come after learning your child’s diagnosis. Your child’s primary care doctor or medical home provider should be the best resource for helping to determine your child’s diagnosis. See Screening Tests and the Diagnostic Process for more information.

Reactions to and Coping with Diagnosis: An Overview

The evaluation for a suspected chronic health condition is often very hard for parents and family members. It may take weeks or months of testing and evaluations by subspecialists before a diagnosis is made. When a diagnosis is made, parents and family members may often feel shock and disbelief. In some cases, a formal diagnosis is still not identified.
Most doctors make every attempt to give sensitive diagnoses in a compassionate way, but sometimes the way they communicate may lead to parents misunderstanding a child’s condition or not understanding written materials given to them. Parents should review information with their doctor or specialist to make sure they understand potential complications or a prognosis (the likely course or outcome). Parents may have questions about how to cope with their child’s diagnosis on an emotional level. Sometimes the emotional impact of a child’s medical problems can be very difficult for parents and family members.

Common Reactions

Though each child is unique and parents’ reactions will vary, some common feelings after learning the diagnosis are anger, sadness, disappointment, fear, denial, rejection, guilt, and sometimes even a feeling of complete lack of control. No matter what emotions family members may have, it’s important to know that those reactions are normal. Below are some things to keep in mind:
  • Depending on their age, children may have many of these feelings. Remember to teach them that it is normal to have these feelings and it can be very helpful to talk about it or express themselves.
  • Each family member may have a different reaction, which is why it’s important to be patient and understanding with spouses, siblings, grandparents, and others.
  • Single parents may find it hard to wade through the emotions surrounding the diagnosis process alone, but it’s important to know that support is available.
  • Siblings of a child with a chronic or terminal illness often have many of the same reactions as parents. Siblings have a special bond with one another and when one isn’t well, the other(s) may be deeply concerned. Siblings may also experience a kind of loss when they realize the thoughts they have about life with their sibling will have to give way to new ideas.
  • Talking about reactions and experiences with support groups or professionals can be very helpful, not only for parents, but also for siblings, and even extended family members. The first step in accepting a diagnosis in the family is learning that parents and family members are not alone in their experiences. The next step is learning how to cope and thrive.

Coping and Thriving

Adult woman holding child in a waiting room
No matter the reactions you and your family may have to your child’s diagnosis, your child is still your child, not just a diagnosis. Never give up hope. While the plans you had at first may change after a diagnosis, that doesn’t mean you can’t have exciting new plans, dreams, and goals for your son or daughter.
Good mental coping skills may sound simple, but when faced with a tough diagnosis it can be easy to forget these everyday tools, such as using your imagination and looking for the humor in difficult or upsetting situations. Although life has changed and taken an unexpected direction, there are still good outcomes to be expected for you and your child. Approach problems head on, and realize that sometimes you may have the answer but, if you don’t, it’s never a bad idea to seek out help.
For more information, go to Taking Care of Yourself and Your Family

The Relationship between You and Your Child’s Primary Care Doctor

The role of the primary care doctor for a child with special health care needs is very important. It is necessary to form a working relationship with your child’s doctor, as he will be responsible for providing health care, information about your child’s diagnosis and treatments, coordinating the care provided by others, and supporting you as parent and caregiver. Make sure you are comfortable with your child’s primary care doctor as a medical expert and as someone you can communicate with and trust. Building a medical home involves parents, doctors, and other care providers working together on the child’s behalf.
It’s vital that you take an active role in your child’s health care. Ask questions and make sure to stay informed about your child’s condition and treatment options. It is a good idea to ask your child’s doctor about information you’ve read about the diagnosis, treatments, and other related problems. Even the most committed doctor faces difficulties in keeping up with the latest scientific and practical information, especially about conditions that are rare. Give your doctor time to review material you bring to her before expecting a big discussion. Your doctor and other health care providers should welcome the information you share and appreciate your willingness to help them help your child.

Resources for Medical Information

Much information about specific conditions and their care is offered in the Medical Home Portal’s “Diagnoses and Conditions” section. Although that section is written primarily for doctors, we hope that families will also use the information found there. The menu of the diagnoses for which modules have been developed can be viewed at Diagnoses & Conditions.
Corresponding Diagnoses & Conditions - FAQs are found in the Portal's For Parents & Families section, and aim to provide an introduction to the condition and answer several common questions.
In addition to the Medical Home Portal, the links below can be trusted to offer high quality information.
  • MedlinePlus Understanding Medical Words
    Tutorial created by the National Library of Medicine to learn about medical words with examples.
  • MedlinePlus Medical Encyclopedia
    From the National Library of Medicine and A.D.A.M.; a comprehensive medical encyclopedia aimed at consumers, with lots of photographs and illustrations
  • Healthy Children (AAP)
    Offers information and advice about child development, health topics, safety and injury prevention, various medical conditions and educational issues, and parenting; American Academy of Pediatrics.
  • National Organization of Rare Disorders (NORD)
    Provides advocacy, education, and other services for people affected by rare diseases.
  • KidsHealth
    KidsHealth is the largest and most-visited site on the web, providing doctor-approved health information about children from before birth through adolescence. This site offers numerous easy-to-read articles on kids' health, written for parents, teens and kids.
  • Genetic and Rare Diseases Information Center (GARD)
    GARD provides access to experienced information specialists with current and accurate information - in both English and Spanish. Created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) - two agencies at the National Institutes of Health (NIH).

Where to Go from Here

Parents who have good information about their child's diagnosis and condition are better able to actively participate in the medical home team, ensuring that their child receives the best care possible. The Finding Quality Information page will help in understanding how to find reliable information about how to move along with caring for your child with special health care needs.

Authors & Reviewers

Initial publication: December 2003; last update/revision: November 2020
Current Authors and Reviewers:
Author: Chuck Norlin, MD
Reviewer: Tina Persels
Authoring history
2014: revision: Tina PerselsR
2010: update: Rachel M. HansonA
2009: first version: Alfred N. Romeo, RN, PhDR
AAuthor; CAContributing Author; SASenior Author; RReviewer