Going to the
Emergency Department

with a Medically Complex Child

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Children and youth with medical complexity are a diverse group with a wide range of conditions, needs, and challenges.

Medically complex children usually have a few things in common.  

A few examples of medically complex children are those who have cerebral palsy with global developmental delays, Trisomy 21 or Down syndrome, and children with tracheostomy or gastrostomy tubes.

Visiting the ED is hard. Every visit to the ED is different, and over time, you’ll learn more about what works best for you and your child. This infographic might help to make it less stressful.

When to go to the emergency department

The ED is where people go for emergency and immediate care related to their health. You know your child and their complex needs. Trust your instincts – if you think your child needs emergency medical attention, take them to the nearest emergency department.

Your child’s healthcare team might also give you specific instructions about when to get help (e.g. if your child’s feeding tube isn’t working). 

If you think they need emergency medical attention, take them to the nearest emergency department.

What to Expect at the Emergency Department

Remember: it’s normal to feel stressed and overwhelmed when your child is sick or needs emergency care. This is especially true when your child has complex medical needs. 

Triage

The first stop at the ED will be at the triage station. Here, a nurse will check your child’s symptoms to decide how urgent your child’s healthcare needs are. 


Patients in the ED are seen in order of urgency and not in the order they came to the ED. This means that someone who came to the ED after you might be seen by the healthcare team before you.

Waiting

You may only have to wait a short time before you see other healthcare providers, or you may need to wait several hours.


It may be helpful to keep a packed bag with some of these items in it for when you need to go to the ED with your child: medications, snacks, activities (e.g. colouring pages, music, tablet), chargers for any electronic devices, and all of your child’s equipment, such as feeding supplies and oxygen equipment.

Getting Assessed and Sharing Medical History

Your child’s name will be called when a healthcare provider is ready to see them. You and your child will be brought to a room where your child will be assessed. Providers will ask about your child’s medical history and medications. They might also need to do some assessments and tests.  


Your child may have a long medical history, and you might have to repeat yourself many times during your visit.  This is expected. Each health care professional is trying to help care for your child. It might be helpful to have a copy of your child’s complex medical history and their medications written down, including when they last had them. This copy could then be shared with each new health care provider involved in caring for your child.

Treatment

Once the health care team understands what your child needs, they will treat your child as best as they can. The healthcare team may not know all of your child’s unique needs, but they are experts in providing emergency care for immediate issues. By working together with you, they will focus on treating your child’s immediate health concerns.


You can also ask healthcare providers in the ED to contact your child’s primary care provider about your child’s medical needs.

Leaving the ED

Some children may be treated and then reassessed before being sent home. Your child may also be prescribed medication to be taken at home. You and your child may have to wait in the waiting room for test results. Some children may be admitted to the hospital so that health care providers can continue treating and monitoring their health.

 

It’s important to ask questions, and have a follow up plan before you leave. Make sure to ask the healthcare team any questions you might have about how to care for your child before you leave the ED. You can ask them to write down the information in your visit summary. If you don’t already have community supports, ask the healthcare team what supports are available in your area.

Your Role as a Parent

Your voice matters

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As you continue to care for your child and have experiences with the healthcare system, you will learn more about your child’s needs and the best ways for you to communicate with healthcare providers. You might have tips for healthcare providers about how to reduce stress and pain for your child or how to communicate with your child. It’s helpful to share those tips with the healthcare team.

Tips

What to bring to the ED

Bring everything you might need for a day and night in the hospital. This might include:

  • health cards,
  • written note with your child’s medical history,
  • your child’s regular medications,
  • your child’s devices and chargers (e.g. ventilator, etc.)
  • spare clothes,
  • comforting toys or blankets,
  • snacks,
  • phone and chargers,
  • distractions (e.g. headphones, tablet, books)

Keep in mind that there may not be public wifi. You may be waiting a long time in a crowded and loud space.

Working together with healthcare providers

Healthcare providers are there to help you and your child. They are trained to provide life-saving support and will work as a team to help your child. It is important that you work together with healthcare providers to support your child’s needs.

Complex Medical History

You might be asked to repeat your child’s medical history, medication list, and diagnosis information many times during one visit. It may be useful to keep a summary of this information either on a piece of paper or in a note on your phone. That way you can easily show it to each healthcare provider. For example:

Make sure to tell the healthcare team if your child’s current symptoms are not typical for them.

Communication

Working in partnership with your child’s healthcare providers is important. Clear communication and staying informed can help. For example, you can ask for updates on test results or consults. You can also help by sharing information about how to communicate with your child, what might agitate your child and what might help calm them.

Asking questions

It is normal to have questions for the healthcare team as they are helping care for your child in the ED. If you or your child need more information or did not understand something that was said, ask again or ask for help understanding.

Waiting in the ED can be hard

“It’s really stressful, actually. Even though we almost always get into a treatment room fairly quickly. But I have had those experiences where I was triaged and then had to wait in the waiting room. Sitting and waiting is really stressful when you have a medically fragile kid.” – Jennifer, parent of a 14 year old.

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Tips

What to Bring to the ED
Bring everything you might need for a day and night in the hospital. This might include health cards, written note with your child's medical history, your child's regular medications, your child's devices and chargers (e.g. ventilator, etc.), spare clothes, comfort toys or blankets, snacks, phone and chargers, and distractions (e.g. headphones, tablet, books). Keep in mind that there may not be public wifi. You may be waiting a long time in a a crowded and loud space.
Hear from Andrea, parent of a 2 year old
Working together with healthcare providers
Healthcare providers are there to help you and your child. They are trained to provide life-saving support and will work as a team to help your child. It is important that you work together with healthcare providers to support your child’s needs.
Hear from Julie, parent of a 16 year old
Complex Medical History
You might be asked to repeat your child’s medical history, medication list, and diagnosis information many times during one visit. It may be useful to keep a summary of this information either on a piece of paper or in a note on your phone. That way you can easily show it to each healthcare provider. For example: Make sure to tell the healthcare team if your child's current symptoms are not typical for them.
Hear from Julie, parent of a 16 year old
Communication
Working in partnership with your child’s healthcare providers is important. Clear communication and staying informed can help. For example, you can ask for updates on test results or consults. You can also help by sharing information about how to communicate with your child, what might agitate your child and what might help calm them.
Hear from Omar, parent of a 9 year old
Asking questions​
It is normal to have questions for the healthcare team as they are helping care for your child in the ED. If you or your child need more information or did not understand something that was said, ask again or ask for help understanding.
Hear from Charlotte, parent of a 1 year old
Waiting in the ED can be hard​
“It's really stressful, actually. Even though we almost always get into a treatment room fairly quickly. But I have had those experiences where I was triaged and then had to wait in the waiting room. Sitting and waiting is really stressful when you have a medically fragile kid.” – Jennifer, parent of a 14 year old.

Extra Resources

What to Expect at the ED | Infographic
Shared Decision Making for Parents and Clinicians | Guides
SickKids Connected Care | Resource Hub
This infographic was brought to you by ECHO & ARCHE
This research was funded by the generous support of the Women and Children’s Health Research Institute.

© ECHO Research and ARCHE, 2025. This resource may not be modified, reproduced or distributed without prior written consent of ECHO Research and ARCHE. Contact shannon.scott@ualberta.ca

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Physical treatments can include physiotherapy, prescribed exercise plans, strengthening exercises, massage, and more. 

Psychological treatments can include counselling or talk therapy, supportive therapy, cognitive behaviour therapy, mediation, and more. They can be provided on a one-on-one basis or in a group setting. 

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The information contained in the video/multimedia content (the “Multimedia”) is provided on an “as is” basis and is offered for general information and educational purposes only; it is not offered as and does not constitute professional advice. There is no guarantee about the accuracy, applicability, fitness or completeness of the information found in the Multimedia. This information is provided without warranty of any kind, and the University of Alberta, its agents, employees, and students disclaim responsibility to any party for any loss or damage of any kind that may arise directly or indirectly as a result of the use of or reliance on the information contained in the Multimedia.

These resources may not be modified, reproduced or distributed without prior written consent of ECHO Research. Contact shannon.scott@ualberta.ca.