Decisions about your child’s care are made with the best interests of your child in mind.

When your child has a heart condition that can be repaired through surgery with low risk and a good outcome, the decision to undergo surgery can be easier. You may want to learn more and explore your options before choosing a hospital for your child’s surgery.

But what if the treatment has a high risk of your child experiencing ongoing pain or disability?

When you make difficult decisions about your child’s medical care, it’s important to consider how your personal values, wishes, or beliefs impact your choices.

Your care team can help you evaluate your options, but different providers vary greatly on how much they will guide you in the decision-making process. Some physicians may tell you when they strongly favor a decision, while others will only explain the options and let you consider the best direction of care. Either way, the choices you make about treatment are ultimately intensely personal decisions.

When you have a big decision to make, be sure that you understand the information that will guide your decision. Think about the goals you have for your child and work with your physicians to create a plan of care.

Essential Steps for Making Medical Decisions

Before making a decision about your child’s medical care, you want to feel confident in your understanding of your child’s heart condition, the treatment options and their expected outcomes, and what it all means for your child and family. The medical team’s job is to explain this information as clearly as possible, and to answer questions about anything you need them to make clearer.

Deciding what is in “the best interest of the child” can be difficult. This is a deeply personal decision that can be affected by values, culture, religion, and other family situations. You may want to talk to other parents, social workers, nurses, physicians, or faith/spiritual leaders to gather information and ideas about how to weigh the medical choices with your personal values.

Parents make many medical decisions on the CHD care journey. After you understand the situation and consider your values, let these basic steps guide you:

  • Get clarity

    Be clear about the decision you need to make and who will make it. Will you make the decision alone, with your partner, or with someone else?

  • Review your information

    Do you have enough information to make this decision? If not, how can you get the additional information you need? Who can you talk with to learn more?

  • Prioritize

    Define what matters most to you. Some priorities to consider are quality of life, avoiding suffering, time with your child, spiritual or cultural beliefs, values, feelings about risk, and affordability of care.

  • Understand the options

    Be clear about your options and the likely outcomes of taking each option.

  • Decide

    Make your decision, then discuss it with your family and your care team.

The Decision to End a Pregnancy

The most extreme decision any parent can face is a choice that would result in the end of their child’s life. After learning that your fetus has CHD, your care team may ask if you would consider ending your pregnancy.

If you’re thinking through the decision to end a pregnancy, start by asking yourself if there’s any diagnosis or expected outcome that would lead you to decide to terminate.

Some parents are very clear that ending a pregnancy is not a step they would ever take. Other parents are clear that they would end a pregnancy in certain circumstances. Do you need to understand any parts of the diagnosis better to help with your decision?

The Decision to Stop Treatment

If your child’s treatment is not likely to be successful in saving their life, your care team may talk with you about allowing a natural death to happen. In this case, the care team would focus on maximizing quality of life and the comfort of your child.

Many parents feel like stopping treatment is “giving up” on their child, and may feel responsible for their death. But there are situations when continuing care causes a child to suffer without purpose.

With your care team’s help, you can identify your goals for your child’s life and consider if there are any treatment options that offer hope of reaching those goals.

Making Medical Decisions About Treatment

We’re trying to prioritize, what’s her immediate need? How quickly does she need surgery? How quickly do we need to move to another facility?

Missy, CHD Parent

PARENT TIPAn Act of Love Can Be a Heavy Burden

Parents who decide to end a pregnancy, or decide not to pursue an intervention that poses a high risk of death, usually do so as an act of love for their child or out of concern for their child’s suffering. This decision can be a heavy burden. It contradicts deep parental instincts to protect your unborn child. Unfortunately some families have even said they have felt politicization, judgment, and shame surrounding termination.

Keep in mind that other people in your life may not have been in a similar situation, and will not understand what you are going through. This is a difficult decision for you and your partner to make after serious consideration, and your healthcare providers will be there to support you.

The sadness of a decision to end a pregnancy or not pursue treatment is yours to carry, but in time you will heal. It’s important that you acknowledge your grief and find ways to cope with the loss of a pregnancy or child.


Every person goes through life with a set of values, and these will enter into your decision-making. It’s helpful to acknowledge your values and not push them aside, or feel guilty about them.

Here are some questions that may help you think about your values:

  • What are my hopes for my child as they grow?
  • Is there any finding or information that would make me feel like treatment is hopeless?
  • How might my culture and/or religion affect my decisions?
  • Are my decisions impacted by fears I have about what other people might say about my decisions?
  • Do I have other worries about the impact of CHD on my relationships, other children, or financial stability?

A parent might decide to end a pregnancy if they know their child has a major genetic abnormality that means their child would likely never live an independent life. In this case it would be important to undergo timely genetics testing.

Some parents may learn that their baby would have a very low chance of survival even after surgery, and they worry about their infant only experiencing pain during an anticipated brief life. For parents who would choose to end a pregnancy if they knew their child had a low chance of survival even after treatment, it might be important to get a second opinion about the expected outcome.

Establishing with your partner what information is important for this decision is very helpful for guiding other decisions as well. For example, if you and your partner know that you will not terminate the pregnancy for any reason, then it makes no sense to undergo genetics testing if it adds risk to the pregnancy. You can defer higher risk tests until after birth.

The care team may suggest removing treatment if there is little hope of a child recovering or having any quality of life. For example, if a child has severe brain injury and the physicians say the child will not experience life as we know it.