Children's Hospital Colorado
Heart institute
Heart institute

Pediatric Congenital Heart Association: Questions to Ask Your Cardiologist

A newborn baby lays on its back and is hooked up to cardiac monitors at the Heart Institute at Children's Hospital Colorado.

“Do not be afraid to ask questions and repeat them as you feel necessary. You are your child's biggest advocate. Additionally, don't hesitate to seek a second and perhaps a third opinion if you feel necessary, especially if you are experiencing any mixed emotions.”
— Heart warrior mom

Receiving a diagnosis of a congenital heart defect can be overwhelming. The Pediatric Congenital Heart Association, a parent-led organization created to serve as a voice for families affected by congenital heart disease, created the following Guided Questions Tool to assist parents in gathering information and making care decisions during this difficult time. We’ve answered these questions as truthfully, transparently and thoughtfully as possible. Feel free to reach out to your cardiologist if you have additional questions or concerns.

What to ask your pediatric cardiologist before heart surgery

Answers from the Heart Institute at Children’s Hospital Colorado, January 2018

Our congenital cardiovascular surgeons perform open heart surgeries requiring cardiopulmonary bypass, in which the heart-lung machine is used during surgery, as well as procedures where no bypass is needed. In addition, our subspecialty-trained cardiac interventionalists perform cardiac catheter procedures that treat heart rhythm disorders, open narrowed heart valves and improve blood vessel size. We perform these procedures on infants, children and young adults.

Our surgical and interventional physicians are board-certified and extensively trained in their field of expertise. Our three highly-experienced surgeons perform more than 500 surgeries a year (total surgeries from January 2013 through December 2017 are listed in the graph below). We are listed as a high-volume center by the Society of Thoracic Surgeons.

Bar graph depicting total surgical cases per year;  2013: 480 2014: 559 2015: 554 2016: 557 2017: 513

Types of pediatric heart surgery and surgical mortality rates

One benchmark of any congenital cardiac program is the surgical mortality: the percent of babies or children who die after a surgical procedure before they go home.

The table below compares the surgical mortality at Children’s Hospital Colorado to other major congenital cardiac centers that report their results to the Society of Thoracic Surgeons.

By Specific OperationTotal Operations Heart Institute July 2013 – June 2017Heart Institute In-Hospital Mortality %STS In-Hospital Mortality %
Arterial Switch Repair 20 0 2.0
Arterial Switch + Ventricular Septal Defect Repair 8 0 5.1
Complete Atrioventricular Septal Defect Repair 46 4.3 2.4
Glenn/Hemi-Fontan Palliation 77 0 1.9
Fontan Palliation 72 0 1.1
Norwood Palliation 67 11.9 15.4
Tetralogy of Fallot Repair 50 0 1.1
Truncus Arteriosus Repair 12 8.3 10.3
Ventricular Septal Defect Repair 123 0 0.5
Off Bypass Coarctation Repair 117 0.9 1.3

 

While there are no benchmarks for interventional congenital cardiac procedures, our interventional team continually develops procedures that are less invasive and that decrease children’s exposure to radiation. We are also a high-volume center with more than 800 procedures per year, as demonstrated in the following graph:

Bar graph depicting Children's Colorado cardiac catheterization procedure volume from 2012 to 2017: 2013: 807 2014: 862 2015: 838 2016: 875 2017: 857

We list our one-year survival rates from 2012 through 2016 in the table below.

Infant open heart surgery survival rates 

By Specific OperationTotal Operations Heart Institute Jan 2012 – Dec 2016Heart Institute One Year after Surgery Survival %
Arterial Switch Repair 20 100%
Arterial Switch + Ventricular Septal Defect Repair 9 100%
Complete Atrioventricular Septal Defect Repair 55 96.4%
Glenn/Hemi-Fontan Palliation 97 99%
Fontan Palliation 92 98.9%
Norwood Palliation 85 81.2%*
Tetralogy of Fallot Repair 70 100%
Truncus Arteriosus Repair 13 92.3%
Ventricular Septal Defect Repair 166 99.4%
Off Bypass Coarctation Repair 148 99.3%

 
*From current studies, the average Norwood survival at one year ranges from 58% to 69%. (Eur J Cardiothorac Surg. 2012 Jul;42 (1):33-9; Heart 2006:92:364-370; Circulation. 2014;129;2013-2020)

The most common complications following heart surgery are:

  1. An increased risk of infection while healing after surgery
  2. Difficulties with feeding in younger babies
  3. An increased risk of a heart rhythm disorder in select heart defects

Infection – Surgical procedures and central venous lines increase infection risk. We follow strict care protocols to decrease your child’s risk of infection. Our surgical site infection and other hospital-related infection rates are 2%, and our central venous line infection rate is less than 1%.

Learning how to eat – Babies with congenital heart disease may need surgery during their first week of life — a time when babies are learning how to eat. Our feeding team who helps these babies learn and assists with any issues that may contribute to difficulty with eating, such as vocal cord issues.

Heart rhythm disorders – Some types of heart disease cause children to have problems with their heart rhythm. Some children will need to go home on medicine, and rarely some children may require a pacemaker to help stabilize their heart rhythm. Our team of heart rhythm experts, called electrophysiologists, help guide decisions about our patients with heart rhythm concerns. 

We report our outcomes to both the Society of Thoracic Surgeons (STS) database and the IMPACT Registry. The STS database includes a total of 118 North American Centers. We compare our outcomes to other STS pediatric heart surgery centers. These data are also publicly available and on our website.

We also report to the IMPACT registry, which helps us compare the outcomes of procedures performed in our cardiac catheterization lab to other pediatric cardiac catheterization centers. We also provide cardiac catheterization data on our website.

Each of our surgeons is subspecialty trained in pediatric congenital heart surgery. Subspecialty training includes: a residency in general surgery (5 years), a fellowship in cardiothoracic surgery (3 years) and an additional year of pediatric cardiothoracic surgery training (1 to 2 years) – essentially 10 years of training after graduating medical school. Beyond their training, each of our heart surgeons has more than 20 years of practical experience. 

In addition, our interdisciplinary team of pediatric heart experts includes cardiac intensive care physicians, cardiac anesthesiologists, cardiac interventionalists, cardiac catheterization technicians, cardiac imaging specialists, electrophysiologists, cardiac genetics team, nurses, nutritionists, perfusionists, social workers, case managers and respiratory therapists who specialize in caring for children with heart disease.

We encourage family involvement in every phase of each child’s care. For children who require a heart surgery or catheterization, we meet with the family to discuss the procedure in advance and encourage families to review our outcomes, ask questions, tour our facility and meet our team. If your child needs to be cared for in the hospital, we ask families to participate in daily check-ins with the inpatient care teams.

Our goal is to make sure families, pediatricians and cardiologists have all the information they need and are confident in their understanding of a child’s potential needs for treatment and follow-up when that child is ready to return home.

The total number of days your child may need to be in the hospital depends how soon your child is able to get back to a healthy baseline.

Average length of stay in the hospital for pediatric heart surgery

The graph below shows the median number of days children with different types of heart conditions stay in the hospital. On average, children treated at Children’s Colorado are able to return home sooner than those at similar North American centers.

Bar graph depicting the median number of days children with different types of heart conditions stay at Children's Colorado compared with other North American centers by procedure.

We work closely with your primary delivery team including your OB/GYN and midwife throughout your child’s prenatal life. In collaboration with your primary prenatal team and your family, we plan where your baby will be delivered.

If your baby’s heart requires a procedure right after birth, we ask you to deliver here at Children’s Colorado in our maternal-fetal care unit, the Colorado Fetal Care Center (CFCC). Our Center is staffed 24 hours a day, 7 days a week with a maternal-fetal specialist in case your baby delivers at an unplanned time. This unit is located one floor above our Cardiac Intensive Care Unit — just a short elevator ride between you and your baby.

We work closely with pediatricians, family medicine doctors and pediatric cardiologists both here in Colorado and in the surrounding states. Our team provides your child’s doctors with regular updates when your child is staying here at the hospital or when they are seen in our cardiology clinic. We perform many of these updates using telemedicine, a secure video-conference, so that your pediatrician or family medicine doctor can see our team and your child and understand your child’s needs. We consider our relationships with your primary doctors to be vitally important and frequently provide updates in order to optimize your child’s health when you are back home. 

If your baby’s heart requires a procedure when they are newborn, we care for them in our Cardiac Intensive Care Unit (CICU), located on the third floor of our hospital. Our cardiac operating rooms, catheterization laboratories, clinic and Cardiac Progressive Care Unit (CPCU) are all located on the same floor, so that children who require heart interventions are close to their cardiology care team.

Once your baby no longer needs intensive care, your baby will graduate to the Cardiac Progressive Care Unit (CPCU), our step-down unit staffed by specialty trained cardiac nurses and cardiology physicians.

Read more about our facilities at the Heart Institute.

Babies who are premature or who have other organ system abnormalities may be cared for in our Neonatal Intensive Care Unit (NICU) with close monitoring by the cardiology team.

Bonding between parents and children is incredibly important. We encourage new parents to hold their babies wherever possible. In very rare cases, babies are too unstable to be held in their parent’s arms prior to a procedure. In these cases, we will have you pull up a chair close to their bedside and place your hands on your baby to comfort them.

Most babies are able to breastfeed before and after surgery, and our lactation specialists help babies and mothers learn how to breastfeed successfully. Nutrition is vitally important, so we create nutrition goals and report on them daily during their hospital stay.

Some babies take additional time to learn how to eat. We have a team of feeding experts who help provide babies the best tools to learn.

Our primary goal at the time of discharge is to ensure families understand their child’s individual medical and developmental needs. We connect families to resources both through our hospital and in their communities to help them successfully transition home.

From the time of your child’s admission we encourage families to get involved in their child’s care. This helps parents gain confidence in understanding their child’s needs. Our specialized nursing staff educates families so that they are comfortable with care procedures when they leave the hospital and know when to contact your child’s primary care doctor or cardiologist.

Our multidisciplinary team plays a vital role in discharge planning:

  1. Our dieticians ensure each child receives the nutrition to grow and thrive. They provide in-depth education to families on special dietary needs specific to each child and are involved in follow-up clinic visits after your child goes home. 
  2. Our cardiac pharmacists help with specific medication education that may be needed for your child. Our nursing staff and team of doctors also educates you about the medicines your child may need, including dosage, timing and how to give the medicine. Most importantly, we will teach you why your child needs each medication. 
  3. Our therapy team, including physical therapists, speech therapists, occupational therapists and lactation consultants, help determine therapy goals your child may benefit from once discharged from the hospital.

Some children may have more complex needs to be successful at home. Our Heart Institute case manager will work with you to coordinate home care, home nursing and home therapies. Additionally, our case manager will help coordinate services specific to your child’s needs, your insurance company and your family’s lifestyle.

During your child’s stay you’ll have opportunities to attend educational classes provided by the Heart Institute, including a newborn care class, training in basic life support and a cardiac discharge class to help you transition home. You will also have the opportunity to watch educational videos. Prior to discharge, we will make sure you have educational materials, teaching tools and phone numbers to call if you have questions or worries about your child’s health.

Connecting families: We frequently connect families with other parents living with their child’s heart defect, and we have a weekly coffee time for new families to meet and chat with current ones. Depending on your family’s needs, we may be able refer or connect you with other hospital and community resources.

Financial services: Our social work team also helps provide information about financial support.

Nutrition services: Registered dietitians with expertise in cardiac nutrition support both inpatient and outpatient areas. They are part of the care team and can answer questions related to general nutrition, growth, tube-feeding and IV nutrition. Our nurses can easily page a dietician any time.

Mental health support: Our team members come from social work, Child Life, psychology, spiritual care and medicine. Social workers help families cope with social, financial and psychological needs associated with their child’s illness, as well as lengthy hospitalization and outpatient treatment. Child Life specialists use therapeutic play, age-appropriate education and coping techniques to help children or teens and their families (including siblings) adjust and cope with the hospital or clinic setting, chronic illness and the treatments involved. Psychologists provide assessment, consultation and interventions to address developmental, behavioral, emotional, social and academic concerns. Chaplains offer support to children and families of all faith traditions and spiritual expressions.

As a team, we offer support to your child and family throughout the course of treatment into childhood and adolescence. Additionally, our cardiac neurodevelopmental specialist provides specialized testing for children and young adults with heart disease.

Your child’s life expectancy and their need for additional heart interventions are closely related to their heart anatomy and the type of heart repair that is needed. Some children may also have other health challenges that are unrelated to their heart defect.

Overall, the outcomes of children with heart disease have improved dramatically over the past 20 years. More and more children are growing to adulthood, living full lives and having families of their own.

Like children without heart defects, some children may need additional help in school or may need some adaptive exercise programs. As a team we try to see your child as a person and not as a patient, making sure their heart defect doesn’t characterize their life.

Our goal is to help each child become a healthy adult. As children with heart defects get older, they may have more and more questions about what it means to have a heart defect. Their cardiologist and the team here at Children's Colorado will help you and your child navigate these questions. We can even put them in contact with other children with similar heart defects. Additionally, our Heart Institute Wellness Program is staffed by a multidisciplinary team of heart experts including social workers, nutritionists, neuropsychologists and cardiologists who will help support your child and family’s physical and emotional wellbeing, inside and outside the hospital.

Some children with heart disease will need additional help in school. Our Wellness Program team and the staff of our Complex Congenital Clinic, along with your pediatrician, will help your family navigate the tools to give your child the best possible learning environment.

We provide life-long care to our heart patients in our Adult Congenital Heart Disease (ACHD) Clinic. This program, run by cardiologists specializing in both pediatric and adult cardiology, is listed in the ACHA Directory and is the only accredited program of its kind in Colorado, Montana and Wyoming.

Our team, based at Children's Colorado and the University of Colorado Hospital, will help ensure that your child gets comprehensive and excellent care throughout the course of their entire life.

Learn about adult congenital heart disease.

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