Many medical professionals are involved in your family’s care during your pregnancy, after your child’s birth, and into their youth.

Along your CHD care journey, talk with your care team so that you understand what’s happening and feel comfortable with the care plan. Your medical professionals know that it can be overwhelming when you are learning a lot of new information, making big decisions, and dealing with uncertainty. You are always encouraged to ask questions and discuss any concerns you have or changes that you notice in your condition or your child’s health.

Over time you will get more experience talking with different types of medical professionals, and you will gradually feel more comfortable with medical language and communicating with your care team.

Here are some of the important care teams and team members that you will get to know on your CHD care journey. Each team member has a unique role in helping you and your child.

Before Birth

The Obstetrical Team

The role of the obstetrical team is to take care of you and your developing child during pregnancy and delivery.

A midwife is a trained professional who provides care to healthy women in an uncomplicated pregnancy. The training to be a midwife is very different from training to be a physician. A midwife should refer you to an obstetrician if the fetus is found to have any condition during the pregnancy. Fetuses with possible CHD should never be seen solely by a midwife. The obstetrician will then determine if you need additional care.

Questions to ask the midwife:

  • Is my baby developing normally?
  • Am I healthy? Is there anything I can do to improve my health/the health of my baby during pregnancy?
  • Where will I deliver the baby?

An obstetrician is a physician. During pregnancy, your obstetrician manages your health and monitors the development of the fetus. They order tests such as the second trimester scan and other common prenatal tests, looking for any risk of genetic problems. They may do some early ultrasounds to monitor very early fetal growth, and some obstetricians perform the 20-week anatomy scan. In many cases they deliver the baby as well.

Questions to ask the obstetrician:

  • Is my baby developing normally?
  • Am I healthy? Is there anything I can do to improve my health/the health of my baby during pregnancy?
  • Where will I deliver the baby?

A maternal fetal medicine specialist – commonly known as an MFM – is an obstetrician who has additional training and experience in managing high risk pregnancies. Your obstetrician may refer you to an MFM for guidance on your management, but may still be the one managing your pregnancy overall. Or your obstetrician may refer you to an MFM to take over the management of your pregnancy and the delivery.

It is common for the 20-week anatomy scan to be interpreted by an MFM specialist. They may refer you for further testing even if they are not the primary physician taking care of your pregnancy.

Questions to ask the MFM:

  • Why was I referred to you?
  • Will you be taking over my obstetrical care?
  • If you are taking over my obstetrical care, where will I deliver the baby?
  • Please explain my baby’s condition to me, and the results of tests that you have ordered or performed.

A fetal sonographer is trained and certified in ultrasound imaging of the fetus. This is the person who typically does the 20-week anatomy scan. They take ultrasound pictures of a baby and look at various parts of the body to make sure that the fetus appears to be developing normally. If a scan reveals a potential problem, the MFM may order a repeat scan later to confirm the findings after a period of additional fetal growth, or they may order additional tests.

Sonographers perform the test but do not do the final interpretation. Because of this, they often will not tell you what they think about the study results, since that is the role of the physician.

A genetics counselor has advanced training in genetics and in counseling. They help you understand the results of any genetics screening tests, and can tell you if they recommend further diagnostic genetic tests.

Questions to ask the prenatal genetics counselor:

  • Please explain the results of the genetic screening or diagnostic tests to me.
  • Are there other tests that can help make the genetic diagnosis clear?
  • (If you have a positive test result for a specific genetic condition) Please explain to me what this genetic diagnosis means for my baby’s health, intellect, life span, and physical condition.
  • What are the implications of this diagnosis for my future pregnancies?

The fetal coordinator helps keep track of patients and families, and guides them through the process of multiple appointments between the obstetrical (or MFM) team and the fetal cardiology team. They are often your primary contact to answer questions and direct you to any resources you need. If there are insurance issues, they can help navigate the process of getting authorization.

Questions to ask the fetal coordinator:

  • Has my insurance authorized upcoming appointments and tests?
  • Where is the physician’s office and when is my appointment?
  • I would like to talk to the physician I saw on (date) again. How can I reach them?
  • Where can I get the emotional support I need?
  • Is there a person there who can help me find transportation to an appointment?
  • (If you need to relocate close to a hospital not near your home for several weeks prior to pregnancy) How can I find local temporary housing that is affordable?

The Fetal Cardiology Team

The fetal cardiology team’s role is to diagnose heart disease in the fetus. Because they understand what the baby’s condition will be right after birth, they will discuss with your obstetrician or MFM the delivery location that allows the infant to receive the appropriate level of care.

The fetal cardiology team is there to give you information about your baby’s heart disease, plan for a safe delivery, and help you understand what to expect after birth and as your child grows.

This is a pediatric cardiology physician who specializes in fetal cardiology. They interpret and sometimes perform the fetal echocardiogram. The fetal cardiologist and their team will teach you about the heart in general, your baby’s heart disease, and what to expect during and after pregnancy.

Questions to ask the fetal cardiologist:

  • What are the results of the fetal echocardiogram?
  • (If the fetal echocardiogram finds a heart condition) Please explain to me what this means for my baby’s health, intellect, life span, and physical condition.
  • Do you think my current delivery plan will allow my baby to have the medical care it needs right after birth?
  • Will my baby need surgery? How many surgeries?

A fetal cardiac sonographer is trained and certified in ultrasound imaging of the fetal heart. An ultrasound of the fetal heart is called a fetal echocardiogram. The sonographer takes ultrasound pictures of the fetal heart during your visits to help the team diagnose heart disease and monitor for changes during pregnancy.

Sonographers perform the test but do not do the final interpretation. Because of this, they often will not tell you what they think about the study results, since that is the role of the physician.

Many medical centers have a fetal coordinator. Their role is to help keep track of patients and families and guide them through the process of multiple appointments between the obstetrical (or MFM) team and the fetal cardiology team. They will often be your primary contact and are available to answer questions and direct you to any resources you need. If there are insurance issues, they can help navigate the process of getting authorization.

Questions to ask the fetal cardiology coordinator:

  • Has my insurance authorized upcoming appointments and tests?
  • Where is the physician’s office and when is my appointment?
  • I would like to talk to the physician I saw on (date) again. How can I reach them?
  • Where can I get emotional support?
  • Is there a person who can help me find transportation to an appointment?
  • (If you need to relocate close to a hospital not near your home for several weeks prior to pregnancy) How can I find local temporary housing that is affordable?

After Delivery/In the Hospital

Depending on your baby’s situation, after delivery you may spend time in the hospital receiving care from additional medical teams. Many of these are the same teams who will care for your child any time they need surgery.

The medical professionals in the hospital will examine your child, perform tests and review test results, perform surgeries and other medical procedures, give you updates, answer questions, and make medical decisions in consultation with the whole team.

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What’s your role? What’s your title, and what are you hear to help with? And they’re pretty clear about what they can do.

Chandani, CHD Parent

PARENT TIPBuild Continuity in Your Care Team

Before your child has surgery, it is very useful to identify one cardiologist who will provide trusted and long-term care for your child – this will be their “primary cardiologist” – and a pediatrician who will manage your child’s overall care. The primary cardiologist may be the physician who sees you prenatally, or who manages your child’s care before they are hospitalized. Or, you may not meet your primary cardiologist for the first time until after you deliver your baby.

Your primary cardiologist is an important resource for you and your child. You develop a lasting relationship with them, and they have an overall, big picture plan for your child. The primary cardiologist really gets to know you and your child. They are an important advocate for you when your child is in the hospital, even if that hospital is far away from home.

If your outpatient, primary cardiologist works at your hospital, your child may or may not see that physician during their inpatient stay. To help with continuity of care, your child’s hospital pediatric cardiologist and team will update your primary cardiologist about your child’s progress and let them know when your child is discharged.

The Neonatal Intensive Care Unit (NICU) Team

Neonatologists are pediatricians who do further training to specialize in the care of newborns with all types of medical problems – including newborns with heart disease. They are experts in newborn care. While your baby is in the NICU, the neonatologist is the leader of the team caring for your child. They are there to help the team make big decisions and supervise your child’s care.

Questions for the neonatologist:

  • How is my baby’s health overall?
  • Has any other part of my baby’s development been affected by the heart condition?
  • What medications is my baby on, and what are they for?
  • (If your baby was born prematurely) How will the premature birth impact my baby’s health?
  • What is the overall expected course of my child’s stay in intensive care?

Cardiovascular Surgery Team

Unlike the other teams, providers on the cardiovascular surgery team are specifically trained first and foremost in surgery. They specialize in pediatric heart surgery rather than the medical side of pediatrics. While your child is in or recovering from pediatric heart surgery, the cardiovascular surgery team discusses your child’s care with the ICU team and provides input.

The cardiovascular surgeon performs surgery for pediatric heart disease and their team provides wound care after surgery. They will meet with you to explain the technical aspects and risk of any surgeries your child needs.

Questions for the cardiothoracic surgeon:

  • Please explain the surgery you are performing on my child.
  • What are the risks of this surgery?
  • Is there anything about my baby’s or child’s condition that may add risk to the surgery?
  • Is there any chance that my child will die after this surgery?
  • Will my child need additional operations after this surgery, and when?

An anesthesiologist is a physician who manages your child’s condition in the operating room. They monitor and give your child medication to keep them asleep and to be sure they feel no pain during the surgery. The anesthesiologist can also be involved after surgery during an emergency situation, or to help with pain management during recovery.

Plus other team members

Intensive Care Unit (ICU)

Depending on your hospital, after surgery your child will be in either an intensive care unit (ICU) under the care of a pediatric intensivist and their team, or in a cardiac intensive care unit (CICU or CVICU) under the care of a pediatric cardiac intensivist and their team.

Both types of physicians are pediatricians with further training in critical care, and many also have additional training in pediatric cardiology. These physicians care for children with heart disease who are very fragile immediately after heart surgery when they require a lot of attention and medical support.

Plus other team members

Palliative Care

Palliative care is focused on improving a child’s quality of life when they have a serious illness, and helping their family cope with the stress of the illness. The palliative care team is typically consulted to help families define their priorities and goals of care that align with their values and beliefs. This can be at any stage of a child’s illness in addition to assisting with end-of-life care.

Acute Care/Stepdown Unit/Cardiology Ward

An acute care pediatric cardiologist is a pediatrician who has received additional training in the care of children with heart disease. They care for children who have spent time recovering in the ICU and are more stable. The acute care pediatric cardiologist and their team have an important role in caring for your child after their stay in the ICU and preparing you for home. The team will teach you what to expect and how to take care of your child after they are discharged from the hospital.

Plus other team members

Other Team Members

The neonatal intensive care unit (NICU), cardiovascular surgery, ICU, and acute care/stepdown unit/cardiology ward teams also include many medical professionals that specialize in their area of care. Here are some of the team members you will meet and a summary of what they do.

This physician leads the medical team because they have the most training and experience in their specialty.

This is a physician who has completed training in pediatrics and is currently spending extra time training in their field (neonatology, pediatric cardiology, or critical care). With the help of the attending physician, the fellow physician leads the team taking care of your child, performs studies or procedures your child needs, and makes medical decisions.

This is a physician who has finished medical school and is currently training in pediatrics – usually by spending weeks or months at a time taking care of children in different areas of the hospital (for example, in general pediatric medicine, cardiology, or neurology). With the supervision of the attending and/or fellow physician, the resident physician makes medical decisions, performs procedures, and provides care for your child.

This is a medical professional who has completed clinical training to care for patients, and usually works in one particular area of the hospital. With the supervision of the attending and/or fellow physician, a nurse practitioner or physician’s assistant makes medical decisions, performs procedures, and provides care for your child.

Your bedside nurse is there to take direct care of your child. They give medications, check and monitor vital signs, place IVs, and do many other patient care tasks. They will also teach you how to do these things at home, if needed.

A respiratory therapist is someone trained in providing respiratory (breathing) care. They give inhaled medications, breathing treatments, and oxygen. In an intensive care unit, the respiratory therapist helps manage the Ventilator and breathing tube.

A social worker is there to help your whole family cope. They can provide emotional support, act as an advocate or liaison for your child, answer questions about insurance and medical leave, and help provide concrete resources – like housing or food – for your family.

A child life specialist is trained in child development. They can help explain medical procedures to your child in an age-appropriate way, and help them through procedures by distracting your child and helping them cope with what’s happening. They can also provide age-appropriate toys and activities to make your child’s hospital stay more enjoyable for them.

This is a nurse specialist who helps coordinate any supplies or extra nursing care needed after your child leaves the hospital.

This is an expert on nutrition. They may provide advice on feeding strategies – such as feeding your child through a tube – or help the care team find the best formula for your child.

This is an expert on all types of medications and how medications work and interact. A pharmacist helps the care team choose the correct medicines and adjust the amount (or dose) that your child takes. Pharmacists participate in daily rounds to ensure that medicines are ordered safely. They are also involved in teaching you or your child about their medications.

Care Through Childhood

After your child is home with you, your child’s core care team is their pediatrician and pediatric cardiologist. You will also see additional medical professionals, but the types of specialists will vary depending on your child’s needs and these may change over time.

A pediatrician cares for the general health of your child. You and your child will see them in an outpatient clinic where they examine your child, talk to you about care of your child, monitor growth, and adjust their feeding regimens as needed.

The pediatrician administers all recommended vaccinations for children with CHD and other preventative care such as flu shots. They can treat minor injuries, as well as make sure that your child is developing normally both psychologically and developmentally. The pediatrician can also coordinate care between different specialists and refer your child to services to help their development.

You will see your child’s pediatrician at regular intervals that depend on your child’s age and condition.

Your primary pediatric cardiologist monitors your child’s cardiac health. You and your child will see them in an outpatient clinic, where they are able to perform some tests – like an echocardiogram to monitor the heart’s condition and function. The pediatric cardiologist manages any medications that are prescribed for your child’s heart condition.

The pediatrician and pediatric cardiologist often need to work together to address some concerns – such as monitoring growth and determining if your child needs additional care to support development. You will also see your child’s pediatric cardiologist at regular intervals that depend on your child’s age and cardiac condition.

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