Helping Your Child after a Cardiac Arrest

Cardiac arrest & its effects

Cardiac arrest occurs when the heart suddenly stops. Cardiopulmonary resuscitation (CPR) can sometimes help the person’s heart restart. Even with CPR, there may not be enough blood flow to the person’s organs during (and sometimes after) the arrest. This can cause short- and long-term damage to organs, including the brain. How much damage depends on how long the arrest was, how healthy the person was before their arrest, and other factors. Recovery from cardiac arrest can involve long periods in the hospital and care from different kinds of doctors and therapists. Full recovery is not always possible. After leaving the hospital, the person can still face long-term medical problems and challenges. Parents (or guardians) need to understand these possible challenges to help them get proper care,  and support.

In the hospital

After a cardiac arrest, most children require care in an intensive care unit (ICU). Sometimes they can be very sick. New problems, both expected and unexpected, can arise. Recovery after cardiac arrest can seem very slow with many ups and downs and feel like bigger problems are just traded for smaller ones. You should know that medications, procedures (including some that use needles), monitors, and other things that sometimes bother the child are often necessary. These things and being sick can cause the child stress and a state of confusion called delirium. After the ICU, most children will spend time in a regular unit in the hospital before being discharged.

How can I support my child in the hospital?

As the parent or caregiver (and co-survivor), you may find the hospital scary, confusing, and overwhelming. There are things you can do to help your child and yourself while in the hospital.

• • Work together with the doctors, nurses, therapists, social workers, etc. to better care for your child. 
  • Write down and ask questions. 
  • Ask for simpler answers if you do not understand them. 
  • Share with medical caregivers what you know about your child, both medical and non-medical things. 
  • Speak up for your child and yourself when you think it is necessary. 
  • Start to learn things that will be important for your child’s care after the hospital.
  • Do what you can to manage your own stress and take care of yourself and other family members.

After the hospital

Some children need to go to a rehab facility after the regular hospital. Rehab facilities/hospitals provide more therapy than what is possible when a child is at home and can help speed up recovery. Here, you will also learn skills you need to care for your child at home.

When your child does leave the hospital and goes home, they may be different than they were before the arrest. They can feel weak and have memory and attention issues. They (and you as a parent) can feel anxious and depressed. They may have new medical problems, new medications, and/or new medical equipment, and will continue to need medical care.

How can I support my child after the hospital?

As a parent/caregiver, you may find managing their care at home scary and overwhelming and find the healthcare system difficult. Over time, you will become an expert in caring for your child’s medical needs. You will feel able to give medications and therapies, use their equipment, and notice signs when they are getting sick. You will learn to coordinate appointments and therapies in and out of the home.

Managing your child’s care

The healthcare system can be complex and difficult. Here are some tips for navigating the healthcare system and to help you stay organized:

• • Educate yourself about your child’s conditions.
  • Keep a detailed record of your child’s medical history, including conditions, current medications, current treatments, past surgeries, and recent test results.
  • Share these records with all medical providers involved in their care.
  • Talk openly and regularly with your medical providers, and ask questions to make sure you understand your child’s care.
  • Create a calendar or use a digital tool to keep track of appointments, therapy sessions, and other important dates.
  • Schedule appointments and therapies on the same day and in the same location to decrease travel, when possible.
  • Keep a list of contact information for healthcare providers, therapists, and other members of your child’s care team for easy reference.
  • Keep a “Go Bag” with your child’s medical info, insurance info, the contact info of all their doctors and therapists, and a 3-day supply of their medications and supplies.

Speaking up for your child

It may be important to speak up for your child’s needs and preferences. This may involve:

• • Clearly sharing your child’s needs, goals, and preferences to medical providers.
  • Sharing concerns or issues about your child’s care, such as communication problems or poor care.
  • Ensuring that your child is always respected as a person.
  • Researching and discussing specific treatments that may help your child with medical providers.

Building a support team

Managing your child’s care is a huge job. You should not do it alone. Building a support team can lessen the burden and help your child and you.

 Your support team may include:

• • Family members and friends who can help with non-medical tasks such as transportation, meal preparation, and emotional support.
  • Professional counselors or therapists can help deal with the stress of what happened in the hospital and the stress of what is happening now.
  • Support groups, both in-person and online, of people who are dealing with similar things can help you not feel alone and share resources.

Caring for yourself

Caring for a child after cardiac arrest can be emotionally and physically demanding. It is important for you to care for yourself so that you can provide the best possible care to your child and your other family members. Some self-care strategies that may help include:

• • Seek support from friends, family members, professionals, or support groups.
  • Take breaks and schedule time for yourself, even if it is just a short walk or a quiet moment to breathe.
  • Maintain a healthy lifestyle, including regular exercise, a balanced diet, and adequate sleep.
  • Seek professional help, such as therapy or counseling, if you are struggling with your caregiving role or are feeling burnt out or depressed.

Sources

Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: A clinical review. JAMA, 311(10), 1052–1060. https://doi.org/10.1001/jama.2014.304

Sullivan, A.B., & Miller, D. (2015). Who is taking care of the caregiver? Journal of Patient Experience, 2(1), 7-12. https://doi.org/10.1177/23743743150020010 

Swartz, K., & Collins, L. G. (2019). Caregiver Care. American Family Physician, 99(11), 699–706.

Thank you to our contributors

Matthew Douma, Jennifer Chap, & Jeffrey Edwards