Your Baby Has Congenital Heart Disease. What Now?
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Hearing that your baby’s heart is different can be overwhelming. Nearly 1 out of every 100 babies born in the U.S. has congenital heart disease (CHD). In addition to learning about the condition and treatment, many parents also need help navigating day-to-day life.
Fortunately, there are useful and supportive resources available to parents of babies with CHD. Here are some informative resources about your baby’s condition and tips for how to care for your child, yourself, and your family.
Tips for Navigating Congenital Heart Disease in Babies
Finding Information You Can Trust
When you first learn about your baby’s heart condition, you may want more details about the condition. Figuring out what online health information to trust can be hard. While your baby’s doctors are the best source of information, below are tips for sorting through what you find online.
Your Baby is Unique
- There are many types of CHD. These may involve combinations of differences in the structure of the heart and blood vessels, how blood flows, and how the heart beats. Even babies with the same condition are not exactly alike and may follow different paths.
- If you read something concerning, tell your baby’s healthcare team. They can help you understand what applies to your situation and provide tailored advice.
High Quality Information Can Be Found from Places that Provide High Quality Care
- Organizations that provide medical care often have helpful educational materials for families. Medical organizations can receive accreditation in Adult Congenital Heart Disease (ACHD). These ACHD Accredited Programs provide high quality care to adults and are often joint programs with children’s hospitals that offer resources for families of babies with CHD.
- You can find a list of ACHD Accredited Programs and their websites here.
Improve Your Search Results
- If you want to search more broadly, you can use certain words to improve search results. For example, you can limit results to certain types of websites. You can find information from government sites by including the text “site:.gov” in search engines. You can find information from educational institutions by including the text “site:.edu”. These words will work across search engines (e.g., Google, Bing, DuckDuckGo, Yahoo).
- Be wary of results labeled ‘Ad’ or ‘Sponsored’ in search results. These placements are paid for through digital advertising services and may not be the most reliable or respected sources of information. Be sure the content comes from a reliable source, first.
- To avoid AI-generated content in your Google search, try adding ‘-AI’ to the end of your search terms.
Finding Support
Many parents feel mixed emotions when they learn that their baby has a heart condition. You may be feeling surprised, uncertain, confused, afraid, worried, sad, or angry. You might also feel a sense of loss that life with your baby isn’t unfolding the way you had imagined. How you feel will likely change over time as you continue to gather and process information. Although everyone’s experience is different, many parents struggle with these feelings.
The stress that comes along with caring for a baby can feel overwhelming, even more so when they have special health needs. Although it may feel like there is no time to think of yourself, taking care of your mental health is an important part of caring for your baby and supporting your family. The resources below include concrete steps you can take to get support.
Community Support Resources
- Emotional Impacts of CHD on Parents
- Heart & Soul: An Introductory Guide for Families Living with Congenital Heart Disease – Chapter 1 (Coping)
- Looking After Your Mental Health Webinar
Heart Dads Are Important
Support for parents often focuses on moms. As a dad, you play a key role in your baby’s wellbeing. Although you may react to the news about your baby’s heart condition differently, you deserve support too. This guide includes information about a dad’s experience having a baby with a heart condition: A Heart Dad How-To
Connecting with Your Child
Caring for a baby can be overwhelming under any circumstance. When your baby has a heart condition, you may feel less confident about how to interact with and care for them. You may also have to change your birth plan, stay in the hospital longer, or meet your child for the first time in the intensive care unit.
Holding, feeding, changing, or dressing your baby can be very meaningful. Ask your baby’s doctors and nurses if there are ways for you to participate in these activities. Often, they can find ways for you to do so even while your baby is in the hospital. You can also ask about the best ways to bond with your baby while considering their special health needs.
Resources:
- 3 Ways You Can Bond With Your Baby
- Breastfeeding an Infant with CHD Video
- Timestamp 14:02 – Preparation
- Timestamp 16:29 – Breastfeeding after heart surgery
- Timestamp 20:09 – Breastfeeding is always possible
- Timestamp 29:28 – Skin to skin care
- Supporting Thinking in Babies with Heart Defects
Supporting Your Other Children
You may be worried about how your baby’s heart condition will affect your other children. Depending on what type of care your baby needs, it may lead to you being away from home more often. It may also mean that you spend a lot of your time at home caring for your baby’s special health needs. Despite these challenges, there are steps you can take to help your other children understand what is happening and feel included.
Resources:
- Psychological Guidance for Siblings
- Family Response About a Child's Heart Disease
- Talking to CHD Patients Across the Lifespan Video
- Timestamp 17:00 – Supporting Your Other Children
Social Support - Connecting with Peers and Loved Ones
You may feel alone in dealing with your baby’s heart condition. While it may be hard to talk about what is happening, reaching out to others is one of the best ways to get help. Parents with similar experiences can provide practical tips that make life a little easier.
The resources below list some ways that you can find and connect with peers. There may also be local support in your area. Ask your care team if they know of any peer mentors, support groups, or hospital-based family networks. You can also ask for recommendations for private Facebook groups like MLH CHD Chat by Mended Little Hearts. Bringing a support person to your baby’s appointments, either in person or virtually, can also be helpful.
Resources:
Financial Support: Paying for Medical Bills and Other Needs
Caring for a baby with a heart condition is expensive. You may have missed work to stay in the hospital or attend your baby’s appointments. You may need to balance being present for everything while also working to maintain your health insurance and pay for the costs of care. The resources below can help you navigate paying for medical care as well as find local services to help with things like transportation, food, and housing. It can also be helpful to ask to speak with a social worker. Social workers can help you learn about services in your area.
Resources:
- Paying for Medical Care
- Finding Local Services
Getting used to your baby’s heart condition takes time. It’s okay to feel unsure along the way. Every family’s journey is different, and there’s no one right way to cope. Start small, lean on support, and know that the resources above are available to help you to take care of yourself and your baby.
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