Children's Hospital Colorado
Heart institute
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Heart institute

The Pediatric Congenital Heart Association's Guided Questions Tool

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

The Pediatric Congenital Heart Association (PCHA) compiled a list of important questions to ask your child's cardiac care team. To help parents get straightforward information to help make decisions about the care of your child, we've answered the PCHA's questions below.

Answers from the Heart Institute at Children’s Hospital Colorado

We perform both surgical (procedures performed in the operating room by our congenital cardiothoracic surgeons) and interventional catheter procedures (procedures performed in the cardiac catheterization room) on infants, children and young adults with heart disease.

Heart surgeries are performed by our highly-experienced congenital cardiovascular surgeons and include procedures requiring cardiopulmonary bypass (the heart lung machine is used during surgery), and non-cardiopulmonary bypass procedures (no heart lung machine is needed).

Interventional catheter procedures are performed by our subspecialty trained cardiac interventionalists. Procedures performed by our cardiac interventionalists include procedures to treat heart rhythm disorders, helping open narrowed heart valves and improving blood vessel size.

Our surgical and interventional physicians are board-certified and subspecialty trained in their field of expertise. We have three full-professor surgeons who perform over 500 surgeries a year. We are considered a high volume center by the Society of Thoracic Surgeons.

One benchmark of any congenital cardiac program is the surgical mortality: the percent of babies/children who die after a surgical procedure and before they go home. See how our surgical mortality compares to other major congenital cardiac centers that report their results to the Society for Thoracic Surgeons.

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 – Any child or adult who undergoes or a surgical procedure and/or has a central venous line has an increased risk of infection. Thankfully we have a low rate of infections in our surgical patients and in our patients with central venous lines. To help prevent infections we follow strict care protocols to decrease your child’s risk of infection. Our surgical site infections as well as other hospital-related infection rates are <2% and our central venous line infection rate is <1%.

Learning how to eat – Babies with congenital heart disease may need surgery during their first week of life – a time when many babies are learning how to eat. We have a feeding team who helps babies learn how to eat. This includes evaluating them for any issues with their vocal cords that may cause difficulty eating.

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 their heart rhythm be normal. We have a team of heart rhythm experts (called electrophysiologists) who help guide decisions about our patients with heart rhythm concerns.

Yes, we report our outcomes to both the Society of Thoracic Surgeons (STS) database and the IMPACT registry. The STS database includes a total of 117 North American Centers. We use the STS database reports to compare our patient outcomes to other centers in order to ensure that we are providing excellent care. Our outcomes and how we compare to other STS pediatric heart surgery centers are available on our website and on the STS website.

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

Each of our surgeons is subspecialty trained to perform 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. In addition to their formalized training, each of our cardiothoracic surgeons has more than 20 years of experience as an attending pediatric cardiothoracic surgeon.

At Children's Hospital Colorado, families are encouraged to be actively involved during every phase of their child’s care. For those children who require a heart procedure, we meet with your family to discuss the procedure prior to their surgery or catheterization. Additionally, before your child has a procedure, we 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 bedside rounding with the inpatient care teams.

When your child is able to return home, our goal is to make sure your family has a seamless transition. It is also our goal to make sure you are confident in your knowledge and that your pediatrician and cardiologist have all the information that they need.

In addition to our surgical team, we have an interdisciplinary team of pediatric heart experts including 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 the care of children with heart disease.

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

If your baby’s heart requires a procedure when they are a newborn, then we ask that you deliver here at Children’s Hospital Colorado in our Maternal Fetal Care Unit. Our Maternal-Fetal Care Unit is staffed 24 hours a day, 7 days a week with a maternal-fetal specialist in case your baby delivers at an unplanned time. It is located one floor above our Cardiac Intensive Care Unit, just a short elevator ride between units.

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. Many of these updates may be performed using telemedicine: a secure video-conference so that your pediatrician or family medicine doctor can see our team, your child and understand your child’s needs. We consider our relationships with your primary doctors to be vitally important and frequently provide medical updates in order to optimize your child’s health care when you are back home.

If your baby’s heart requires a procedure when they are newborn, he or she will be cared for in the Cardiac Intensive Care Unit (CICU). Our CICU is a 16-bed unit (that can expand to a 22 bed unit) located on the third floor of our hospital. Our cardiac operating rooms, cardiac 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), which is our step-down unit, for further care. This unit is staffed by specialty trained cardiac nurses and cardiology physicians.

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

Read more about our facilities at the Heart Institute.

We encourage all parents to hold their child – bonding between parents and their children is incredibly important. In very rare cases, babies are too unstable to be held in their parent’s arms prior to a procedure. In the event of them being unstable, we will have you pull up a chair close to their bedside and place your hands on them to comfort them.

Most babies are able to breastfeed before and after surgery. We are thankful to have terrific and thoughtful lactation specialists who help babies and mothers learn how to breastfeed successfully. We believe nutrition is of vital importance and thus, create and report on your child’s nutrition goals daily during their hospital stay to ensure they are receiving the appropriate amount of nutrients. Some babies take additional time to learn how to eat, and we have a team of feeding experts who help ensure that we are providing him or her with 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 will ensure your family has all appropriate medical and community resources to help you successfully transition from the hospital to home.

From the time of your child’s admission our team is dedicated to encouraging families to be hands on in helping with their child’s care needs. We feel that this helps parents gain confidence in understanding their child’s needs. Our nursing staff specializes in educating families so that they are comfortable and confident when they leave the hospital.

Our multi-disciplinary team including: dieticians, pharmacists, case managers, speech therapists, occupational therapists, lactation consultants and physical therapists all play a vital role in discharge planning.

  1. Our dieticians ensure each child receives adequate nutrition to grow and thrive. They provide in depth education to families on special dietary needs that are specific to each child. Once discharged dieticians are involved in follow up clinic visits to ensure your child continues to thrive out of the hospital.
  2. Our cardiac pharmacists are here to help with any specific medication education that may be needed for your child. Our nursing staff and team of doctors also educates you about what medicines your child may need. We will teach you and your family the correct dosage, timing and how to give each medicine your child needs. Most importantly, we will teach you why your child needs each medication.
  3. Our therapy team, including physical therapists, speech therapists, occupational therapist, and lactation consultants play a vital role in determining what kind of 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 closely with you to coordinate home care, home nursing, home therapies. Additionally, our Case Manager will help coordinate services that are specific to your child’s needs, your insurance company, and your family’s lifestyle.

During your child’s hospital stay, there are opportunities to attend educational classes provided by the Heart Institute. These classes include a Newborn Care Class, training in Basic Life Support and a class to help you transition to home (Cardiac Discharge class). You also have access to educational videos.

We want to make sure you are educated and confident with your knowledge about your child’s health and understand when to contact your child’s primary care doctor and cardiologist. Prior to leaving the hospital 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 together with other parents that have a child with a heart defect and have a weekly coffee time for parents when your child is admitted. Depending on your family’s unique 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. Included is a separate information sheet from our social work team with some helpful information.

Nutrition services: Registered dietitians with expertise in cardiac nutrition support both in-patient and out-patient areas. They are part of the interdisciplinary care team and are available to answer questions related to general nutrition, growth, tube feeding, and IV nutrition. They are easily accessed. If you have any nutrition questions, ask your nurse to page your dietitian.

Mental health support: Our team members come from social work, child life, psychology, spiritual care and medicine. Social workers help families cope with and adjust to social, financial, and psychological needs associated with their child’s illness, lengthy hospitalization, and outpatient treatment. Child life specialists utilize 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 and support overall child wellbeing. 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 from diagnosis and throughout the treatment course into childhood and adolescence. Additionally, we have a Cardiac Neuro-Developmental Specialist who is able to provide neurodevelopmental 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. Also, some children may 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 living to be adults and have full normal lives as adults (including having their own families).

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 make sure that you child is seen as a person not as a patient. Thus, it is our job to help make sure that their heart defect doesn’t characterize his or her 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 as well as the team here at Children’s Hospital Colorado will help you and your child navigate these questions including putting them in contact with other children with similar heart defects if that is something you are interested in. Additionally we have a Heart Institute Wellness Program that is staffed by a multidisciplinary team of heart experts including social workers, nutritionists, neuropsychologists and cardiologists who will help provide holistic goals for your child’s health.

Some children with heart disease will need additional help in school to ensure that they have a successful learning environment. Our wellness team and staff of our Complex Congenital Clinic along with your pediatrician will help your family navigate what tools are needed to help your child have the best learning environment.

Yes, we have a team who specializes in caring for adolescents and adults with congenital heart disease. This team, based at Children’s Hospital Colorado and the University of Colorado, will help ensure that your child is provided with comprehensive and excellent care when your baby becomes an adult. We provide life-long care to our heart patients through our Adult Congenital Heart Disease (ACHD) Clinic. This program is run by cardiologists who specialize in both pediatric and adult cardiology. We are listed in the ACHD Directory and are the only accredited program in Colorado, Montana and Wyoming.