Women's Health & Wellness

Living with a Hidden Heart Story: What is CHD?

Congenital heart disease (CHD) is a broad term for heart abnormalities that develop before birth. CHD varies widely—from minor structural quirks that may cause few issues to complex conditions affecting how blood flows through the heart. Around 1 in every 100 babies is born with some form of CHD. Thanks to medical advances, many children born with CHD now thrive into adulthood, and many women with CHD are healthy enough to consider pregnancy.

Pregnancy with CHD: Balancing Dreams and Real Concerns

Pregnancy brings a whirlwind of emotions for every woman: joy, anticipation, and maybe a few jitters. For women with CHD, it also stirs unique questions about safety and health. “Will my heart handle the extra strain?” “Is it safe for my baby?” For some, these worries may feel heavier than the excitement. It’s perfectly natural to have concerns and mixed emotions. But you’re not alone on this journey—many women with CHD have safely welcomed babies with the right planning and medical support. 

A Journey of Hope and Preparation

With thoughtful care, planning, and support, successful pregnancies are within reach for most women with CHD. It all starts with having a strong, dedicated, expert medical team that understands your specific heart condition and the ways in which pregnancy and childbirth will affect it. Working closely with a specialized team will help you take control, allowing you to approach pregnancy with confidence, optimism, and the same joyful anticipation every expectant mom deserves.

Understanding Congenital Heart Disease and Pregnancy

How CHD and Pregnancy Interact: Understanding the Heart's New Role

Pregnancy is a time of incredible change for the body—and the heart has one of the biggest roles to play. During pregnancy, a woman’s blood volume increases by as much as 50%, her heart rate rises, and her heart pumps harder to meet the demands of her growing baby. Pregnancy also increases a woman’s risk of other medical complications, such as high blood pressure, infection, and bleeding. For a woman with congenital heart disease (CHD), this extra workload will increase strain to her heart, making it essential to have a care team that understands how her specific condition may respond to these changes.

The Unique Needs of Women with Adult CHD 

As more women with CHD reach adulthood, understanding how adult congenital heart disease (ACHD) interacts with pregnancy is increasingly important. While some women with CHD may have few or no symptoms, others—especially those with more complex heart conditions—can face increased risks of complications, such as heart rhythm issues or heart failure, during pregnancy. Pregnancy is different for every woman, and this is especially true for those with CHD. Knowing the specifics of your congenital heart defect and its implications is key to managing your pregnancy with confidence.

Why Your CHD Diagnosis Matters

Not all congenital heart defects and pregnancies affect each other in the same way. Understanding your particular diagnosis helps you and your healthcare team make informed choices that help protect you and your baby. Some heart conditions can raise the risk of pregnancy complications, while pregnancy itself can sometimes worsen heart-related issues. However, other heart conditions have little to no impact on pregnancy. If you’re unsure about the details of your CHD, or if you have questions about how it could impact pregnancy, having an open conversation with your cardiologist or maternal-fetal medicine specialist is a great first step.

With knowledge, planning, and a team that understands your heart, you can feel more in control on your journey to motherhood. 

Choosing Your Care Team

The Power of a Team: Why You Need a Multidisciplinary Approach

Pregnancy with CHD is best managed by a team that knows how to blend heart care with pregnancy care. This isn’t a journey to take alone—each specialist brings unique expertise to help you have the safest experience possible. At UC Health’s Cardiac Care in Pregnancy Clinic, a team comprised of heart doctors, pregnancy specialists, and anesthesia experts focus on what’s best for you and your baby. Working together, they anticipate, help prevent and manage potential complications.

Your Key Players: Who’s on Your Care Team?

The backbone of your team includes three essential specialists:

1. Cardiologist: Your cardiologist, specializing in adult congenital heart disease, will monitor your heart function and manage any specific cardiac needs throughout pregnancy and beyond. 

1. Maternal-Fetal Medicine (MFM) Specialist: These obstetrics specialists are trained in high-risk pregnancies, making them critical team members for women with CHD. They help assess and plan for potential pregnancy risks, ensuring a safer journey for you and your baby.

1. OB Anesthesiologist: UC Health has uniquely trained anesthesiologists who keep you safe and comfortable through your delivery experience.  Childbirth is a time of exposure to many added risks for the heart patient- pain, adrenaline, anesthesia medications, fluid changes, blood loss- and our team of expert dedicated OB anesthesiologists are well-versed in managing the most complicated heart disease in pregnancy and childbirth.

Our specialized Cardiac Care in Pregnancy Clinic is designed for women with heart conditions, including CHD. A cardio-obstetrics team is more than a safety net; it’s a supportive, knowledgeable group that walks with you each step, from preconception counseling to delivery and postpartum care.

With the right team in place, you’re setting a strong foundation for a healthy and positive pregnancy journey, guided by experts who understand both you, your heart and your pregnancy.

Pre-Pregnancy Planning and Counseling

Setting the Stage: Why Preconception Counseling Matters 

For women with CHD, pre-pregnancy planning is one of the most important steps in the journey to motherhood. During preconception counseling, you’ll sit down with your cardiologist, an MFM specialist, and sometimes a genetic counselor to create a personalized plan. This counseling helps you understand potential risks, make informed choices, and set realistic expectations for pregnancy.

Assessing Your Heart’s Strength: Cardiac Output and Vascular Resistance 

Your heart will need to work harder during pregnancy. To determine how well it can handle the added demands, your healthcare team will assess key indicators, including cardiac output (how much blood your heart can pump) and systemic vascular resistance (how easily blood flows through your blood vessels). These assessments help your team predict how your heart might respond to pregnancy and identify any risks that need special attention.

Medication Safety and Adjustments 

Certain heart medications might not be safe to use during pregnancy, as they could affect fetal development or your own health. In preconception planning, your cardiologist reviews all medications and, if needed, may suggest alternatives that are safer for pregnancy. Adjusting medications beforehand helps prevent complications and ensures you’re on a stable treatment plan before conceiving.

Considering Genetics: Understanding Inherited Risk 

In some cases, congenital heart defects may have a genetic component. Working with a genetic counselor can help you understand whether there’s an increased chance of passing a heart condition to your baby. Genetic counseling offers both information and reassurance, helping you and your partner make choices with a fuller understanding of potential outcomes.

With thorough planning and early support, pre-pregnancy counseling builds a roadmap for a safer, healthier pregnancy journey, empowering you to move forward with confidence and clarity. 

Managing Your Pregnancy

Keeping a Close Eye: Why Monitoring is Essential

During pregnancy, your heart will face new demands that can impact both your and your baby’s health. Regular check-ups are essential to stay on top of any changes and prepare for childbirth. Your team will likely recommend more frequent cardiovascular evaluations, especially in the later stages when the heart is working its hardest. These visits allow your cardiologist and MFM specialist to monitor how your heart is responding to pregnancy and catch any issues early.

Fetal Echocardiography: Monitoring Your Baby’s Heart 

Just as your heart needs extra attention, so does your baby’s. A fetal echocardiogram—a special ultrasound for the baby’s heart—is often recommended if you have CHD. This test allows your team to detect any potential heart issues in your baby early, which is especially important if there’s a genetic component to your CHD. Early detection helps prepare for any interventions or care the baby might need after birth, giving you peace of mind as your pregnancy progresses.

Managing Heart Rate, Blood Pressure, and Other Vital Signs

With CHD, managing your heart rate and blood pressure is a top priority. High blood pressure, which commonly occurs in pregnancy, or irregular heart rhythms, can increase the risk of complications for both you and your baby. Your healthcare team may recommend safe medications or lifestyle adjustments to help keep these vitals in a healthy range. Small actions—like staying active, resting when needed, and watching salt intake—can make a meaningful difference in managing symptoms.

Taking Care of Yourself: Stress Management and Self-Care 

Pregnancy can bring its share of stress, especially with CHD in the mix. Prioritizing self-care is not just a luxury; it’s an important part of staying healthy. Activities like prenatal yoga, deep breathing, and even short, mindful walks can reduce stress and boost your mood. Remember, your mental well-being is closely tied to your physical health, so finding ways to unwind can be a powerful tool in supporting both you and your baby.

With regular monitoring, mindful self-care, and guidance from your healthcare team, you’re setting yourself up for a safe, healthy pregnancy—staying in tune with your heart every step of the way.

Risks and Complications

Understanding the Risks: What to Watch For 

Pregnancy with CHD can come with unique risks for both mother and baby. While some women may experience a smooth pregnancy, others, especially those with complex CHD, may face complications. Knowing what to watch for can help you feel prepared and aware of symptoms that might need attention. Your healthcare team will work closely with you to monitor these risks and intervene if necessary.

Maternal Risks: Protecting Your Heart 

For women with CHD, there are specific heart-related risks during pregnancy. While rare, some cases can result in worsening cardiac function and even heart failure, arrhythmias (irregular heartbeats), or other cardiac events. These risks can vary greatly based on the type and severity of CHD. Heart failure may develop if the heart struggles to meet the demands of pregnancy, while arrhythmias can disrupt normal blood flow and oxygen supply. In rare but serious cases, certain heart issues may even lead to life-threatening complications. Understanding these risks and following your team’s recommendations can make a difference in staying safe.

Fetal Health Risks: Focusing on Your Baby’s Well-Being 

Babies born to mothers with CHD may face a higher risk of congenital heart disease or other developmental issues. Your care team will recommend regular ultrasounds and fetal echocardiograms to keep an eye on the baby’s heart and growth. If any issues are detected, early planning can help prepare for interventions at the time of birth, if needed. These regular checks also provide reassurance, giving you valuable information about your baby’s health as they grow.

Building Confidence with Knowledge and Support 

Understanding these potential risks can feel daunting, but knowledge is a powerful ally. By being proactive with regular monitoring, following a personalized care plan, and asking questions along the way, you can feel more confident navigating these risks. 

Your healthcare team is there to support and guide you, ensuring you’re prepared for any challenges and equipped to make informed decisions for both you and your baby. 

Preparing for Delivery

Crafting a Birth Plan: Planning for a Safe and Supportive Delivery

When you’re approaching delivery with CHD, having a clear birth plan is essential. This plan isn’t just about the “where” and “how” but also about coordinating the right team to support you through labor and delivery. Your cardiac care team will determine the safest delivery method for you and your baby, whether vaginal or cesarean. They’ll also consider and plan the optimal timing and location, often recommending delivery in a hospital equipped for high-risk pregnancies.

Labor and Delivery: Specialized Care for Every Step 

During labor, your heart faces its greatest challenge, as contractions and delivery increase the heart’s workload. For some women with CHD, labor may need to be adjusted to avoid placing too much strain on the heart. In certain cases, medications or interventions can help control heart rate or blood pressure, and some women may benefit from a shortened “pushing” phase or assisted delivery methods, such as forceps or vacuum, to reduce exertion. Additionally, an anesthesiologist familiar with CHD may be part of your team to manage pain in a way that’s safe for your heart. And if labor needs to be avoided for the safety of the mother or baby, it's essential to plan for how a cesarean section might affect your heart and the extra steps involved in the surgical delivery.

Postpartum: The Critical First Hours and Days

The immediate postpartum period can bring significant shifts in blood volume and heart function as your body adjusts from pregnancy back to its pre-pregnancy state. These rapid changes can sometimes trigger complications, such as clotting risks, heart failure or arrhythmias, particularly in women with complex CHD. For this reason, your team will closely monitor you in the first hours and days after delivery, keeping an eye out for any symptoms that need attention. Your recovery plan may include continued heart monitoring, specific medications, an extended stay, and plenty of support to help you rest and regain strength.

Ready for the Next Step with Confidence 

Preparing for delivery with CHD means embracing both the joys and the necessary precautions of childbirth. By planning with a specialized team and having the right support on hand, you’re set up for a safer, supported birth experience. 

With each step prepared and your team by your side, you can focus on what matters most: welcoming your baby into the world.

Postpartum Care and Long-Term Outlook

The Days After Delivery: Watching for Postpartum Changes 

After birth, your body undergoes significant adjustments, especially in blood flow and heart function. For women with CHD, the postpartum period can sometimes be as challenging as pregnancy itself, with potential for complications like heart failure or arrhythmias as the heart adapts to these changes. During this time, your team will monitor you closely to ensure your heart is handling the shift back to its usual workload. Regular check-ups and clear communication with your healthcare team will help address any early signs of issues, allowing for prompt intervention if needed. Additionally, your UC Health team is available to provide guidance on postnatal topics such as breastfeeding safety, birth control options, and other aspects of postpartum care.

Building a Strong Recovery: Support for Moms with CHD 

If you experienced complications during pregnancy or delivery, postpartum recovery might require additional care. This could include specific medications to support heart health, guidance on physical activity, and plenty of rest. Emotional support is just as important—balancing newborn care with heart health can be exhausting. Support from loved ones and open communication with your team about how you’re feeling, physically and emotionally, can make a huge difference in your recovery.

Looking Ahead: The Importance of Long-Term Cardiac Care 

Managing CHD is a lifelong journey, and after pregnancy, it’s important to continue regular follow-up with a cardiologist to keep track of your heart health. Even if you’re feeling great, consistent check-ins help monitor any changes that could arise over time, as well as discuss options for future family planning. Your cardiologist can guide you on safe birth control options and help assess the risks and timing of future pregnancies, should you consider them.

Thriving Beyond Pregnancy: Embracing Life with CHD 

With the right care and long-term support, many women with CHD lead healthy, active lives while raising their families. 

Staying proactive with your heart health and maintaining open conversations with your care team can empower you to manage your health, embrace motherhood, and thrive in all the years to come.