Most children with CHD need to stay in the hospital at some point. When your child is in the hospital, you are faced with the challenges of dealing with their needs while also handling your regular daily responsibilities and other family needs.

As soon as your child can form an opinion, they will probably dislike being in the hospital. They will feel tired and possibly ill. At the same time you may also be tired and stressed.

Even in the best of circumstances, it can be hard for parents to manage time spent in the hospital. The logistics of life require some creativity and effort but – with a little planning – there are things you can do to keep both you and your child at ease.

Explore some common challenges below and think about how you can prepare in advance or adapt in real time. Remember that you are not alone! Talk with your care team or other parents if you are struggling or need advice, and find ways to reduce your stress.

Managing Your Other Responsibilities

Do you have other children or older adults to care for? Will your work cover you while you are away? Here are some ways that parents of children with CHD manage other responsibilities when they’re in the hospital.

Get Support at Home

You may be wondering how your other child(ren) will be cared for while you are gone. One solution is to ask your partner, a relative, or another trusted adult to stay at your house and provide care while you are at the hospital. If you will be away for an extended time, you may need many people to help at home. One way to get organized is to create a schedule for when your children will need care. You can share the schedule with others to find out when they might be available, and to be sure that you and your children have support when it’s needed.

Learn Your Hospital’s Visitor Policy for Children

If you want to bring your other children with you, check ahead of time with the hospital about their visitor policy. If you find that visiting children are not allowed in the hospital, you will need to make another plan.

Find Out About Local Housing Options

If your child needs to stay at the hospital for a long time, ask your care team if they can connect you with affordable housing options in the area so that your family can all be together. Some hospitals are affiliated with a local Ronald McDonald House. These are homes located close to a hospital that provide long-term housing for parents of a child with a chronic medical problem like CHD. If there is space, you and your other child(ren) can stay there together.

Ask if Your Workplace Has Family or Medical Leave

The U.S. does not have national paid family leave. However, your workplace may have a family or medical leave policy. Contact your human resources officer or department to find out what protections there are to maintain your income and job during a long absence. Talk with a social worker if your care team needs to write a letter to inform your job about why you are required to be at the hospital.

Supporting Your CHD Child

The medical team will take care of many of your child’s needs while they are in the hospital, but your child will need your parenting as much – if not more – than ever. Here are some common experiences that parents have in the hospital and suggestions for how to manage these challenges.

In the recovery period, babies may not be able to breastfeed or tolerate their usual formulas. Mothers that breastfeed can pump using breast pumps provided by the hospital, and then store their milk in hospital freezers to use later. Many hospitals have a quiet room that is just for breast pumping in private (often somewhere near the Neonatal ICU or NICU). Ask to see a lactation specialist if you need help with pumping or getting your baby to latch.

Older children may not feel well enough to eat their usual diet or they may exercise control over this part of their lives and resist eating. If it’s okay with the medical team, you can bring your child foods that they love from the cafeteria or from a local restaurant that will deliver the food to the hospital lobby. Eating their food of choice can be a nice way to give your child some sense of control over their life, and to make it feel more like home.

Supporting Your Other Child(ren)

If you have other children at home, their practical needs are not the only thing you’ll need to consider while you are at the hospital. Your children’s emotional needs are equally as important as making sure they are eating well and keeping up with their regular activities.

Being apart from family can be difficult for CHD siblings. They naturally worry about what’s happening and their routines are disrupted. They may also feel sad or anxious about missing the attention and love they usually share with you. Sometimes children feel guilty about having these feelings, and may not share them with their parents.

When you feel stressed and overwhelmed, it can be a real challenge to balance caring for your child in the hospital and making sure your child(ren) at home feel loved and supported. Even if you can only spend a small amount of time focused on your other child(ren), it can make a big difference by providing them the reassurance they need.

Regularly check in on your child(ren) at home, ask about their thoughts and feelings, and tell them that you love and miss them. Video calls with siblings are a great way to keep them informed and connected with you and their brother or sister in the hospital. A child life specialist or social worker at your hospital may be able to suggest other ways to support your other children during this challenging time for your family.

You may need to try different ways to support the general well-being of all your children, but it’s important to learn how to manage the impact of CHD on your family and get support when you need it.

PARENT TIPWhat to Pack for the Hospital

Missy Mitchell – a mom of two kids with CHD – posted this great article on lifehack.org of 10 Things to Pack For Your Child’s Hospital Stay.

Among other things, Missy suggests you bring electronics, a list of important information, entertainment, anything that provides comfort, and your child’s “second favorite toy/blanket/lovie.”

Just as importantly as anything you can pack in a bag…

Bring your sense of humor. You will need to laugh when things get rough. Bring your strength. You’ll need it and so will your child. Bring your courage. Sometimes you need to be an advocate. Sometimes YOU know better and you’ll need to speak up. Bring your patience. Hospitals are busy. Nurses are human. Most of all, bring all your love and attention. Your child is scared, even if he/she doesn’t show it.

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