No Diagnosis
All medical complexity involves some degree of uncertainty, but the lack of a diagnosis can only heighten the frustration, stress and sense of isolation. You may feel confused as specialists suggest different approaches to testing and treatment as they try to determine how best to care for your child. You and your parenting partner, if you have one, may have different visions for how you want to proceed. Finding support will help you navigate and feel more confident on this journey.
Your Team:
A specialist in evaluation, diagnosis, and management of patients with hereditary conditions.
A mental health professional who uses therapy and other strategies to support coping and adjustment and treat concerns regarding social, emotional, or behavioral functioning.
A trained professional who works with people, groups and communities to help them better their lives.
An individual who leads and/or guides individuals or groups coping with life experience and challenges.
A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.
Professionals who have completed advanced training in a specific area of medicine.
A medical professional who practices general medicine.
Groups that represent and support patients and their families/care partners.
A child-life specialist can provide age-appropriate guidance for your entire family, including siblings. A genetic counselor can help determine if or when additional genetic testing may be beneficial, and offer emotional support as you search for answers. A psychologist, social worker and/or spiritual leader can offer emotional support. Palliative care clinicians can provide a space for reflecting on your goals and can help you advocate and communicate with the medical team. A symptom-specific specialist can be helpful. Your child’s primary physician can also be a good resource, especially if they already know your family and can see the big picture of your family’s experience. Patient organizations, including organizations that focus on undiagnosed conditions, can be a place to find support.
Some parents describe the feeling of being without a home. What specialists will your child need? What community is available to give you access to information and perspectives from other families?
“The doctors are not positive about anything. So, we have come to a place where we are just living strictly in the moment. We are trying to just enjoy Mia today because honestly that is all we know we will have her for.“
– Brittany, parent of Mia
Tools for Navigating
Courageous Parents Network exists to support all caregivers grappling with the diagnosis of a child’s serious medical condition, including no-diagnosis. There are no answers but it is possible to find support for and insights on the emotional and caregiving challenges that you, like all parents caring for a child with a serious medical condition, are facing.
- Anticipatory grief is not technically a tool, but understanding what you are feeling can help with feelings of isolation and fear. Your child’s condition means a series of losses to anticipate, and with that anticipation comes a rush of emotional responses. Many families find it helpful to name that response. They often find it comforting to learn that the feelings are normal, and part of a process with its own name: anticipatory grief.
- Goals of care is a term commonly used to refer to what ideas and values guide you in decision-making for your child. These can include decisions about their comfort, their participation in family and community activities, and your hopes for the trajectory of their life. Your goals of care are the foundation and guide for decisions you may need to make over time.
- You will be your child’s Number 1 Advocate, playing an active role in making decisions for their child and family. There are established practices for shared decision-making, starting with understanding your own decision-making style. The CPN guide “Framework for Sharing Decision-Making with Your Child’s Clinicians” describes different family and clinician styles and offers ideas for breaking through challenges in making decisions.
- The medical team will be interested in your assessment of how and when you feel your child’s condition has shifted. Baseline is a technical term for where things are when they are stable. The guide “Understanding Baseline” provides an overview and suggests questions and prompts for identifying changes over time.
- Palliative specialists, and clinicians who incorporate palliative practices, focus on comfort and relief of suffering. They assist the family in decision-making and can act as a liaison between the family and the medical team. Courageous Parents Network strongly advocates for families to ask for a palliative care consult. Some families resist palliative care because it is easily confused with hospice. It is not hospice, although palliative practice may be a part of hospice care. The CPN guide “Understanding Palliative Care and Hospice Care” explains the differences and how palliative care benefits the child and family.
