When you learn about your child’s CHD from a pediatric cardiologist, they usually describe the type of care your child will need and suggest a hospital that treats the specific heart condition. After you absorb the news that your child needs heart surgery, you may wonder how to find the best place for your child’s care.

Many families choose to follow their physician’s hospital recommendation and most get excellent care. Some families do look at other options, and they may select a different hospital than the one their physician initially suggested.

Comparing hospitals, cardiac centers, or surgeons is very difficult because each one has many strengths. Ultimately, you need to decide on the one that feels right for you and your family.

There are many things to consider if your family wants to explore hospitals – including your values, beliefs, resources, and circumstances. There are also some basic things to look for as you research and evaluate other options.

Always talk with your pediatric cardiologist if you are thinking about changing the plan for your child’s care and going to another hospital. Your conversations with the physician who knows you, your family situation, and your child’s heart condition are the most reliable information you will get about how to find the best care for your child.

Possible Factors in Your Hospital Choice

  • You need a hospital that is close to home and your support network of family and friends, so you choose the nearest hospital that does pediatric cardiac surgery.

  • Your local hospital told you that the operation your child needs has a very high chance of death, but a second opinion at another hospital is more optimistic.

  • You prefer a large hospital that performs more surgeries or a hospital that has an international reputation for excellent care.

  • You heard from another parent of a child with a similar CHD diagnosis that you should consider care at a particular hospital because of their experience.

  • You want to have a particular surgeon operate on your child because you have heard good things about them.

Exploring Pediatric Cardiac Programs

If your child’s CHD diagnosis means they will require repeated surgeries – or if you are told your child will need complex care – it may be useful to see if your hospital offers a pediatric cardiac program for specialized care.

A program is a group of medical professionals with expertise in an area working together to provide highly specialized care at a hospital. When a hospital develops a program, they devote money and time to deliver care to specific types of patients with complex needs in a thorough and consistent way.

Programs typically coordinate a patient’s care with multiple types of medical professionals. This means that your child would receive an exceptionally high level of care from many different types of specialists within the same hospital, without the added burden of you having to arrange this care yourself. You can feel confident that a hospital with an established pediatric cardiac program has experience with the complex care your child may need.

Common Types of Pediatric Cardiac Programs

There are many types of pediatric cardiac programs. While some programs focus on very rare forms of CHD, there are several common programs that you will see most often in your research.

1. Interstage Program (IP)

An IP is for children with one pumping chamber (single ventricle). Infants between two staged surgeries are monitored closely at home through frequent phone check-ins with nurses.

2. Single Ventricle Program (SVP)

An SVP is for children with one pumping chamber (single ventricle). This program typically organizes complex care from multiple types of medical professionals. It also assesses a child’s development and advocates for special services in your child’s school if needed.

3. Neurodevelopmental Program (NDP)

An NDP will help identify and treat developmental, behavioral, or learning challenges in children with CHD.

4. Heart Failure/Transplant Program (HFP)

An HFP manages treatment for children with heart muscle weakness. This may include medication, devices that assist the blood flow to the body, or a heart transplant.

How to Research Pediatric Cardiac Hospitals

When you are researching hospitals online, it is important to get information from multiple sources. You develop a better perspective when you learn how many people feel about a hospital because everyone has different priorities and opinions.

Here are some places to get started in your online research. While each of these resources may give you some information, what you read on one website should not be the only basis for a major decision regarding your child’s care. Always talk with your pediatric cardiologist if you find information online that makes you want to go to another hospital than the one your physician recommends.

Hospital Websites

Hospitals spend a lot of resources to communicate their successes and expertise online. Pediatric cardiac surgery is often a very important source of revenue for a hospital, so they actively market their services.

When you look at a children’s hospital website, do a keyword search for:

  • Heart Center
  • Pediatric Cardiothoracic Surgery
  • Heart Surgery
  • Pediatric Cardiology

Independent Sources

  • CHD Hospital Navigator
    Created specifically for parents, this site helps you understand what types of specialized programs a hospital offers, volumes of surgeries broken down by complexity, as well as whether the survival rates for the surgeries there are at expected levels. It also includes guidance about how to interpret the information provided. At this point in time, not all hospitals have contributed their information to this site.

  • Society of Thoracic Surgeons Public Reporting
    This site lists the outcomes of pediatric cardiac surgeries as they are reported by participating hospitals. Not all hospitals report their pediatric cardiac surgery outcomes, but you may still find information about a hospital on this site that is useful to you.

  • U.S. News and World Report Annual List of Best Children’s Hospitals for Cardiology and Heart Surgery
    This ranking system attempts to rate measures typically associated with high quality care and can help inform you. These rankings do tend to vary significantly year to year without obvious changes in the programs themselves. Often this is due to a change in how they determine the rankings, rather than an actual change at the hospital.

Online Reviews

Look for reviews of the hospital online to learn about their areas of expertise, annual surgical volume, cardiac programs, and any other information you are interested in. Be aware that online reviews can be biased and may not represent the general experience of patients.

FAQs

There are many things to learn when you choose a hospital. In addition to asking questions about their medical services and outcomes, you should know about the social and support services available to you.

Conquering CHD’s Guided Questions Tool can help you get started thinking about what’s most important to you.

California Heart Connection also has a list of questions to ask the surgeon and hospital.

You may also need to consider other factors including travel time, if you will need temporary housing close to the hospital, and options for family care.

Your health insurance carrier will direct you to a hospital that is in-network for their care plan. At an in-network hospital, your insurance typically pays for medical care as outlined in your policy. Take some time to understand how health insurance works.

Your care team can help you ask your insurance to make an exception and pay for your child’s care at an out-of-network hospital. If your insurance says no to your appeal, you must decide whether you can afford to pay for out-of-network care personally or if you need to change your plan and choose an in-network hospital.

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