Coping while your child is in the hospital can be difficult, and some days are tougher than others.

Parents and caregivers commonly experience stress during their child’s hospital stay. This includes the unpleasant feelings or emotions many of us have when we are especially overwhelmed.

When your child is in the hospital, it’s easy to focus only on their health and recovery, and to forget or ignore signs of stress coming from your own mind and body. Learning to recognize signs of stress and finding healthy ways to relieve these feelings will help you stay healthy.

You are the most important person on your child’s care team. It’s critical that you remain strong so that you can actively care for your child and be their greatest advocate in the medical system.

By managing your stress, you can focus on your child’s recovery and take care of yourself and your family on the CHD care journey.

How You May Feel When You’re Stressed

While everyone reacts differently to big challenges in life, there are common signs of stress among parents and caregivers of children with CHD.

  • Tense muscles, headaches, or pain throughout your body

  • Not getting enough sleep, having trouble falling or staying asleep, or having nightmares or frightening dreams

  • Difficulty controlling your feelings or becoming frustrated more easily than usual

  • Fear or worry about stepping away from your child’s bedside

  • Feelings of doubt or mistrust about the care team and their care goals for your child

  • Feeling that you are to blame for your child’s health condition and feeling that somehow you must be responsible for solving or fixing the health issues

  • Feeling lonely and isolated

  • You stop turning to the people you would normally turn to for support

  • Experiencing flashbacks or unwanted memories related to events in your child’s care

Steps You Can Take to Decrease Your Stress and Feel Better

  • Recognize your emotions

    It’s normal and expected for you to feel overwhelmed and stressed during the CHD care journey. This is especially true in a medical environment when you are also managing uncertainty. Allow yourself time to reflect on how you are feeling. One way to start is to name the emotions you are feeling today.

  • Prioritize self-care

    It’s important to make time for self-care. You are an essential member of the care team, but you will be best able to care for your child if you are rested and healthy. Even doing small things for yourself – like going for a short walk outside the hospital – can really help you reduce stress. Keep reading for more simple self-care strategies.

  • Talk with your care team

    If the stress feels like too much to handle, tell your child’s care team how you are feeling. Lean on support services like social workers, chaplains, child life and nursing staff. Share concerns or issues happening at home that are contributing to your stress. Tell the team if you feel a need for more or less communication and more support.

  • Lean on your family and friends

    Keep in touch with trusted family and friends, and let them know when you need help. You can ask family to step up and care for other children or help with responsibilities at home. You can also ask another caregiver to support your child at the hospital while you take a break. Explore other tips for navigating your hospital stay.

  • Find online resources and support groups

    Many parents find it helpful to connect with other CHD parents online who share similar experiences and can provide support and understanding through a hospital stay. During this time, your hospital may also be able to connect you with parent support groups or mentors in your area.

  • Seek professional support

    It is common for CHD parents to get additional professional help through counseling, talk therapy, or medication. Seeking this kind of emotional support may feel uncomfortable for some people. Please remember that by taking this step you are showing strength and finding a new way to take care of your child.

Ways to Prioritize Self-Care in the Hospital

  • Try to eat regularly

    Staying on a meal schedule will help you keep up your energy. Every hospital has a cafeteria, and the front desk may have a list of nearby restaurants that deliver food. Preparing food for yourself can be a challenge. Find out if your hospital has a family lounge area, and whether it has a refrigerator or microwave where you can store and heat food.

  • Make time for daily care

    You will be able to use a bathroom and shower either in your child’s room or in a shared space. Be sure to bring essential medicines and personal care items – like your toothpaste, soap, and lotions – as well as comfortable clothes you can wear after a shower. Some hospitals have facilities where parents can do laundry during an extended stay. If you forget things, many hospitals have a shop where you can purchase items like toiletries and books.

  • Take short breaks for your health

    As you feel comfortable leaving your child for a brief time, get up and stretch or walk around in the hospital and the area around the hospital outside. Spend some time with the chaplain, social worker, family, or friends if you need to talk through your feelings.

  • Try different sleep strategies

    Your sleep and self-care can be interrupted by all the medical professionals constantly entering and exiting the room to see your child. Many hospitals will allow you to sleep in your child’s room, but you and your child may not sleep well because alarms, different beds, and the pain after surgery get in the way. Ear plugs may help you with the noise level, or consider a white noise app on your phone to help soften the noise.

Recognizing and Reducing Stress

You think you’re just sitting around, but emotionally you’re doing a lot.

Rachel, CHD Parent