Managing Uncertainty

During your CHD care journey, there may be times when you feel uncertain and confused about the future. It’s very common to feel uncertain when you do not have all of the answers or do not know exactly what will happen.

Unfortunately, you cannot avoid uncertainty in medicine. A physician may give you a diagnosis or prognosis with vague terms like “might” or “maybe” that are not comforting when you urgently want to know everything about your baby.

While uncertainty is a fact in medicine, it can help to identify where the uncertainties exist and ask your physicians for any information that can give you more clarity.

Uncertainty can cause parents to feel helpless, inadequate, distressed, or anxious. So it’s especially important that you learn how to manage any uncertainty you have in a situation.

When there is not a clear path ahead, you can reduce uncertainty by learning more from your care team and filling in as many gaps as possible about your child’s heart condition.

Common Sources of Uncertainty

“Inconclusive” Test Results

Sometimes the quality of the information may be incomplete, since not all imaging is perfect. A test may reveal something, and the physicians may not be certain what the finding means. This can be very confusing and upsetting, since you go to a test with hope that the results will be clear, not “inconclusive.”

The Need to “Wait and See”

In the case of a prenatal diagnosis, the physicians may want to see how the baby develops during the rest of the pregnancy before they reach conclusions about the heart’s condition. Similarly, they may need to observe your baby after birth to know the prognosis. In these situations, uncertainty about your baby’s heart during pregnancy is unavoidable.

The Healthcare System

Managing the healthcare system can add to your feelings of uncertainty from a very practical standpoint. For many parents it can take time to understand what the different care providers do and how they work together as a team. Every medical office runs a little differently, and you may feel rushed to schedule more appointments – sometimes without an explanation of the purpose. You may also struggle to understand how medical insurance works.

Major Unknowns and Decisions

It can be difficult to get a handle on how many ways a CHD diagnosis will impact your family. While the answers will come in time, you naturally want to know what the diagnosis means for your child’s life. Among many other things, you may also wonder what caused the heart defect, or question where you should get treatment and what will happen after.

What You Can Do to Help Manage Uncertainty

Learn how to build a good partnership with your care team

When you are stressed you need clear information. It helps if your physician explains things simply and one concept at a time. It also helps if you understand how you want information delivered. For instance, some parents like details and statistics, while others just want the “big picture” without going into great detail. Tell your care team what you prefer. When they deliver information the best way for you, it will be easier for you to process.
Look for more information

It can be empowering to find more information on your own – either by searching the internet for resources or getting a second opinion from another physician. You should do this without fear of upsetting anyone on your care team. However, it’s very important to ask your physician or nurse if you find information online that is different from what they told you about your child’s specific condition.
Hold on to hope

For some parents, focusing on positivity and hope is very helpful. It’s okay to remain hopeful for a better outcome even when you understand the negative prognosis from your physicians. If hearing the same bad message repeatedly is draining and depressing you, tell your medical team. Explain that you know and understand their expectations for your child, and that in follow-up visits you only want to be told if anything about the diagnosis or prognosis changes.
Look for ways to connect with the care team

If you are diagnosed prenatally, you may find it helpful to get additional clinical support outside of your regularly scheduled appointments. This could include having someone on your care team check in on you and make sure you have the information needed to prepare for the birth. If possible, meet with others on the care team – like the neonatal intensive care unit (NICU) team or the cardiothoracic surgeon. Taking a tour of the hospital before your child’s birth or surgery may also address some uncertainties and provide you some relief.
Allow yourself time to adjust

Taking life “one day at a time” can be useful in difficult situations because looking ahead may feel overwhelming. Have confidence that in time you will learn how to handle everything. By meeting each day’s needs, you will gradually gain more information and feel better about your ability to understand and manage your child’s condition. While this may take months or years, remember that many parents have travelled this road before you.

I try not to have expectations. Anything that I can control or plan out, I like to have controlled and planned out.

Austin, CHD Parent

PARENT TIPUncertainty Can Impact Your Emotions

For some parents the personal cost of uncertainty is feelings of anxiety, loneliness, not knowing how to feel, and possibly even blaming themselves for the CHD. Anxiety can persist long after the diagnosis if there’s no explanation for the irregularity, and you may fear that the same thing could happen in future pregnancies if no one can tell you why this happened.

Parents who are struggling with the uncertainties of a CHD diagnosis often find it helps to talk with a mental health professional. If you are experiencing strong emotional reactions, you can also tell the care team that you need to keep a positive and hopeful outlook to maintain your psychological health through the pregnancy or treatment.

There are a lot of ways to get help through the uncertainty, and it’s important for your health and your child’s to find the emotional support that you need.

FAQs

I’m doing my best to communicate with the care team and get information, but I still feel lost. Is this normal?

Many parents have challenges communicating with their care team. During the CHD care journey, your care team will constantly change and this can add to uncertainty. Each physician or medical professional has their own way of talking with patients – including how much information they share and how much time they spend with families.

Some people on your care team will explain things in medical language that may be hard to understand, while others will speak in plain language that is easier to understand. You can tell a care provider how you prefer to receive information, but that doesn’t guarantee how they will communicate with you. You may need to ask for information more than once, and you will need to learn how to talk with each new person.

All of these factors make it really hard for families to navigate uncertainty and to trust their care team. Be patient with yourself and with your care team as you learn how to communicate with each other. If you are having difficulty understanding what is happening, focus on one key piece of information you want to learn from the care team and start from there.

What kind of additional information should I be looking for online?

It may help you to get more information about CHD. There are also many ways you can connect with other CHD families. Some parents find information from other parents to be very helpful, especially if their child has a similar diagnosis. Some social media platforms like Facebook can help you find these parents, and some patient advocacy groups have information directed to parents.