The Heart Center Patient Family Resources
Children’s Health℠ is here to help you better understand your child’s heart condition or illness. Here you’ll find resources and information to help you feel more comfortable during your time at The Heart Center. From a detailed heart terminology guide to a comprehensive list of who does what on your child’s care team, we offer a number of resources to guide you through your child’s care.
For information on what to expect for each step of your child’s care, such as preparing for surgery, what to bring for your hospital stay, frequently asked questions and more, visit What to Expect When Your Child Visits the Heart Center.
Our Programs
Adult Congenital Heart Disease Program
Our experienced pediatric and adult cardiologists offer comprehensive care and treatment for patients at every age – from newborns to teens and adults with congenital heart disease.
Biventricular Repair Program
On the resources page, the sentence requested will read as follows: Our Biventricular Repair Program is an innovative surgical procedure that provides 2 ventricle circulation for your child's heart.
Cardiac Catheterization and Intervention
We offer one of the most experienced programs in the country offering a safe, minimally invasive and reliable method for evaluating and treating certain forms of pediatric heart disease.
Cardiac Imaging
Our specialists use the most advanced technology to diagnose your child’s heart condition and create a tailored treatment plan.
Cardiac Neurodevelopment
For children with congenital heart conditions, we are recognized as specialists in identifying those at risk for developmental delays, providing evidenced-based interventions, and connecting the whole family to specialized inpatient and outpatient care and support. The Heart Center at Children’s Health is proud to be a part of the Cardiac Neurodevelopment Outcome Collaborative (CNOC) and the Pediatric Acute Care Cardiology Collaborative (PAC3).
Cardiothoracic Surgery
Our program is one of the most experienced in the country and is consistently ranked among the top in the nation for surgical outcomes.
Cardiovascular Genetics
The Pediatric Cardiovascular Genetics Clinic offers thorough evaluation and long-term management for infants and children with inherited cardiovascular disease. We treat the full spectrum of genetic disorders that can affect your child’s heart, no matter how complex those needs might be.
Congenital Coronary Anomaly Program
While rare, congenital defects in the heart’s coronary arteries can have serious consequences – especially for young athletes. We specialize in diagnosing and managing these often silent heart defects so children and adolescents can continue playing sports, safely.
Dilated Aorta Program
This multi-specialty program brings together cardiology, genetics, ophthalmology, orthopedics and more for a comprehensive approach to your child’s treatment.
Electrophysiology (Arrhythmia)
We are the only hospital in Texas using advanced imaging technology to create three-dimensional views of heart structures and electrical signals at the same time – allowing for faster and more thorough imaging while also minimizing your child’s radiation exposure.
Fetal Heart Program
Our dedicated fetal heart cardiologists work closely with parents, maternal-fetal specialists and an experienced care team to identify and diagnose congenital heart conditions with a high degree of accuracy.
Fontan Program
The Fontan Program establishes a center of excellence that streamlines lifelong care for Fontan-single ventricle patients. This program focuses on all aspects of a child’s physical and mental health, and addresses any social, learning and neuropsychological disorders.
Pulmonary Hypertension Program
Our Pulmonary Hypertension Program brings together a team of expert doctors – including pediatric cardiologists and pulmonologists – to evaluate your child from every angle and design a treatment plan that’s right for them.
Safe at Home
This program educates and empowers parents to help care for their infants with single ventricle defects who require staged surgical procedures. Since care plans can often be complex, we offer support and training that can help you feel comfortable when it’s time to go home. Contact your fetal care team to see if your child’s treatment plan includes this program.
Ventricular Assist Device (VAD) Program
As the only pediatric transplant and ventricular assist device (VAD) program in North Texas, our experienced team is turning heart failure into heart function. Some children are born with heart defects or have certain diseases that reduce their heart’s ability to pump blood. VADs are mechanical devices that help pump blood for the heart.
Learn more about The Heart Center, conditions treated and services provided.
Floors/Care units
The Heart Center at Children’s Health consists of six care units. Learn more below about each one to get more familiar with where your child will be receiving care.
Cardiac Intensive Care Unit (CICU) – Third Floor (D3)
Our experienced team in the cardiac intensive care unit (CICU) is committed to helping your child recover quickly and safely from heart surgery, catheter-based procedures, advanced treatments or complications from cardiac conditions. Rooms in the CICU allow for seamless care and monitoring of your child.
Each room includes a couch, recliner and storage cabinet.
Bathrooms are located inside and outside the CICU.
Two showers and a laundry room with small lockers are available outside the CICU.
A waiting area is outside the unit on floor three (D3).
Food is not allowed in the CICU. Eating at your child’s bedside is prohibited. All food must be stored outside of the CICU in the Family Pantry Room, which has a refrigerator, vending machine and fresh coffee available to parents.
Cardiology Acute Care Unit - 8th Floor (C8)
All rooms on the cardiology floor are private rooms and include:
Storage cabinet for belongings kept in the room
Private bathroom with a shower
A couch that pulls out to a double bed
Recliner
Food is allowed in this unit, and visitors can eat at your child’s bedside.
Heart Clinic
The Heart Clinic is where patient’s are seen for outpatient visits. It could be for routine follow up, post surgery, new diagnoses, etc. Each room is private and you will be assigned a nurse who will start the visit by taking your child’s vitals. Once all relevant information is collected, the provider meets with the family and the patient.
Cardiac Pre/Post Anesthesia Care Unit
This is where patients go prior to and sometimes after procedures to recover. The unit is run by anesthesiologists and is focused on pain management and fluid status of patients going into and coming out of surgery.
Operating Room (OR)
This is where various inpatient and outpatient surgical procedures are done.
Cardiac Catheterization Lab (Cath Lab)
Patients undergoing cardiac catheterization will come to the Cath Lab for the procedure. Your child will be admitted at the hospital either the morning of or the night before their procedure. Your child will receive sedation prior to the procedure, and stay in the recovery room for a period of time afterwards. Most times, your child will be sent home the day of or one to two days after the procedure.
Amenities
Food Storage
Food is not allowed in the cardiac intensive care unit (CICU), floor three (D3). All food must be stored in the Family Pantry Room outside of the unit. This room has a refrigerator, microwave, vending machine, water, ice and coffee. All items left in the refrigerator need to be labeled with the patient’s name. We do not have pantry storage.
The cardiology unit, floor eight (C8) has two kitchenettes. Both have a refrigerator where you can store food labeled with the patient parent’s information, a microwave, water and ice for patient families.
Laundry facilities
There are two free laundry facilities located outside of the cardiac intensive care unit (CICU), floor three (D3) and the cardiology unit, floor eight (C8). You may bring your own detergent, or we have detergent available for purchase.
Lactation room
There is a lactation room, located on D3 that all families from the cardiac unit (C8) and CICU (D3) are welcome to use.
Family waiting area
The family waiting area has a TV, chairs and recliners.
Care team
You and our medical experts are one team, helping your child on their journey to healing. That’s why we encourage you to participate in your child’s care through open communication with your child’s care team. Every person who assists in your child’s care will announce who they are and what they’re there to do.
We want you to feel comfortable interacting with your child’s care team so you can advocate for your child’s needs and understand your child’s care plan. To better understand your child's journey to healing, it is important to know what each person does.
Attending physicians are experts in their field of medicine or surgery. They may also oversee the practice and education of medical students and residents.
Advance practice providers (APPs) are health care providers who are not physicians, but perform medical activities typically done by a physician. APPs include Physician Assistants (PAs), Advanced Practice Registered Nurses (APRNs) such as Nurse Practitioners (NPs), Certified Registered Nurse Anesthetists (CRNAs), Certified Nurse Midwives (CNMs), and Clinical Nurse Specialists (CNSs)
Cardiac anesthesiologists use anesthesia to make sure your child is comfortable. The anesthesiologist will make sure your child is not awake or experiencing any pain during surgery. They will watch your child closely while in the operating room.
Cardiac nurses specialize in caring for patients with heart conditions.
Cardiac radiologists use imaging techniques such as X-rays, ultrasound (echocardiograms), CT (computed tomography) scans and MRI (magnetic resonance imaging) scans to diagnose and monitor heart problems.
Cardiologists are medical doctors that specialize in heart conditions.
Cardiothoracic surgeons are medical doctors who specialize in surgical procedures of the heart, lungs, esophagus, and other organs in the chest.
Cardiac intensivists are medical doctors that specialize in cardiac critical care in the Cardiac Intensive Care Unit (CICU).
Fellows are fully credentialed physicians who are in the process of completing further training in a specialty under the supervision of an attending physician.
Fetal cardiologists are pediatric cardiologists with special expertise in the diagnosis and management of problems that affect a baby's heart, both before and after birth.
Fetal coordinators help families navigate through the entire care journey. Fetal coordinators help families create the best plans for pregnancy, delivery and care of their baby.
Interns are medical students that have not yet graduated medical school.
Interventional cardiologists use various diagnostic tools and imaging techniques to measure cardiovascular functions such as blood pressure and blood flow in major arteries throughout the body and within the different chambers of the heart.
Perfusionists operate a heart-lung machine (bypass), which is an artificial blood pump, which propels oxygenated blood to the patient's tissues while the surgeon operates on the heart.
Residents are physicians who have completed medical school and are doing two to seven years of training.
Respiratory therapists (RT) provide breathing and oxygen support to patients who have difficulty breathing and getting enough oxygen into their blood.
Sonographers use imaging equipment and sound waves to form images of many parts of the body, known as ultrasounds.
Resources and support
Children’s Health support services
Care coordinators
The Heart Center has Care Coordinators who have been assigned to patients to offer consistency in care management and help with your child’s discharge needs. Care Coordinators make referrals for home care services and transitional care facilities, arrange home equipment and supplies, set up ambulance transport if needed and coordinate insurance coverage for your child’s discharge needs.
Child Life
The Child Life Department continues to work alongside the medical staff to ensure a positive experience for our patients and families. From therapeutic arts to pet therapy and more. The Child Life specialist focuses on your child’s developmental growth and helps your child maintain a sense of normalcy during what can be a very abnormal time. The child life specialist can educate you in ways to connect to and interact with your child even while he or she is undergoing intense medical treatment. They are also available to prepare and assist siblings with coping in the hospital setting.
Financial Assistance
To help children receive the care they need, Children’s Health provides financial assistance for medically necessary services. Learn more about eligibility, the application process and services available to patients and families.
Lactation Support
Whatever your plans – breastfeeding, pumping, bottle feeding or some combination – our multidisciplinary care team supplies the evaluation, education and support needed to meet your goals. Working together, our highly experienced team develops a personalized feeding plan for mom and baby.
Language and Interpreter Services
The Heart Center has two dedicated Spanish interpreters available in the clinic and on the Cardiology Units.
Music Therapy
Board-certified music therapists use a variety of musical expression to support children throughout their hospitalization.
Occupational Therapy
Your child may need occupational therapy because they are born with a condition that affects their ability to care for themselves, play, rest as needed, or attend school. Occupational therapists work to improve your child’s ability to participate in routine activities.
Pastoral and Spiritual Care
Children’s Health provides Chaplain services 24 hours a day to support our patients and their loved ones. Should a patient family wish to request a visit from the clergy of their particular faith community, this request can be made by contacting the unit Chaplain or Spiritual Care team.
Pet Therapy
Our therapy dogs provide comfort to patients who are coping with an unfamiliar environment or challenging situation.
Physical Therapy
Physical therapy is a planned program of activities that will help improve your child’s movement or pain. A licensed physical therapist examines your child and plans treatment based on your doctor’s request and the therapist’s evaluation of your child’s needs.
Psychologists
Pediatric psychologists help children and families cope when they are in the hospital. They can also help when children are feeling sad or having a hard time with being in the hospital. Pediatric psychologists also help families learn different ways to help their child when they go home from the hospital and go back to school. Pediatric psychologists can meet with each patient and family during outpatient and inpatient visits.
School Services
When a child has an illness, is in the hospital or is returning home, it is important that they continue with as many normal activities as possible. This includes school. The School Services department at Children’s Health provides help for your child so they can keep up with their school needs. We offer school support for our patients through local school districts, on all campuses.
Social Work
The Social Services department at Children’s Health helps families find the resources and services they need such as crisis prevention, family counseling, support groups, home health care planning and more. Contact our professional licensed social workers 24/7. Your family will have the same social worker from diagnosis throughout care.
The Heart Center has both outpatient and inpatient social workers to support you and your family through your pregnancy, hospitalization and follow-up care at Children’s Health. These social workers, dedicated solely to our families seeking cardiac care, are specially trained and licensed to provide support to families coping with illness, assess patient and family psychosocial needs, provide crisis and therapeutic counseling, prepare families for transition from hospital to home and educate and link families to community resources. Our team of social workers focuses on the unique needs of every family at each visit to the hospital.
Speech Therapy
A speech and language pathologist provides therapy to help your child overcome problems that affect speech and swallowing. Our speech pathologists are specialists in caring for children and adolescents, so they can assess your child’s issues in relation to typical development and skills for children their age.
Community Resources and Support
Support Groups
Conquering CHD
Conquering CHD exists to conquer the most common birth defect, congenital heart disease. They engage, listen, learn, support, and act. They create visibility and empower all impacted by CHD. They accomplish this through awareness, knowledge, support, community and research.
Mended Little Hearts
Mended Little Hearts is a support program for parents of children with heart defects and heart disease. The Dallas branch offers resources, peer-to-peer support, monthly gatherings, hospital visits, Bravery Bags and other activities to help families find answers, healing and hope.
Learn more about the Dallas chapter, Mended Little Hearts of Dallas.
Sisters by Heart
This volunteer-led organization supports and empowers families dealing with a single ventricle heart defects such as:
Hypoplastic Left Heart Syndrome
Tricuspid Atresia (TA)
Double Inlet Left Ventricle (DILV)
Atrioventricular Canal Defect (AV)
Pulmonary Atresia with Intact Ventricular Septum (PA-IVS)
Government Insurance Programs
Children with Special Healthcare Needs (CSHCN)
The CSHCN program provides health benefits and family support services to children 20 and younger who have special health care needs and people with cystic fibrosis of any age. To be eligible for this program, a child must live in Texas, be 20 years old or younger (or any age with a diagnosis of cystic fibrosis), have an income level at or below 200% of the federal poverty line and have a qualifying medical condition. The Children’s Health Financial Counseling Office can assist in screening your child for eligibility as well as with the application process.
Health Insurance Premium Payment Reimbursement Program (HIPP)
This is a Texas Medicaid program that helps families pay for employer sponsored health insurance premiums. Those eligible for the program have a family member with private health insurance and at least one person who gets Medicaid. Medicaid will pay the family’s private health insurance premiums if the total cost of that insurance is less than the total cost of care with Medicaid. If approved, Medicaid may pay the private health insurance costs for the entire family and not just for the family members who get Medicaid. The family will get services through the private health insurance plan.
Institutional Supplemental Security Income (SSI) for Children
If your child has been in the hospital for a whole calendar month, they may be eligible for Institutional SSI and Medicaid depending on length of stay and diagnosis. You must apply for Institutional SSI prior to discharge to be eligible. The Children’s Health Financial Counseling Office can assist with the initial application.
Medicaid Waiver Program
A Medicaid waiver allows the state to assist individuals and provide some long-term services to those with disabilities or elderly citizens who are eligible for Medicaid. Medicaid waivers override certain rules for how Medicaid funding can be used. If an individual meets eligibility requirements, they can receive services they need in their own homes or other community settings, instead of having to go into a nursing facility or institution. You may apply and/or qualify for both Medicaid benefits, as well as Medicaid Waiver programs.
Medicaid and Children’s Health Insurance Plan (CHIP)
Children's Medicaid is a health care program for children in low-income families. CHIP is a health care program for children whose families earn too much to get Medicaid but cannot afford health insurance. To be eligible for either program, a child must be age 18 or younger (in some cases children with disabilities age 19 or 20 can get Medicaid), a Texas resident and a U.S. citizen or qualified non-citizen. The Children’s Health Financial Counseling Office can assist in screening your child for eligibility as well as with the application process. You may also apply by calling 211 or visiting Your Texas Benefits.
Medicaid Buy-In
The Medicaid Buy-In for Children program offers Medicaid services to children with disabilities in families that make too much money to qualify for Medicaid. To be eligible, your child must be age 18 or younger, have a disability, and be a U.S. citizen or qualified non-citizen. If you receive Medicaid Buy-In, you may be required to pay a monthly payment based on your family’s income, health insurance availability through your employer and utilization of other programs. The Children’s Health Financial Counseling Office can assist in screening your child for eligibility as well as with the application process.
Medically Needy with Spend Down Program
The Medically Needy with Spend Down program helps both families with children age 18 and younger and pregnant women who do not qualify for Medicaid to pay for unpaid medical expenses. To qualify, an individual or family subtracts their health care expenses from their income until they meet the program’s income and asset limits, also called “spending down.” If approved, clients enrolled through this program submit their paid and unpaid medical bills each month. Medical bills greater than the monthly spend-down amount are covered or reimbursed by Medicaid.
Supplemental Security Income (SSI)
SSI provides monthly assistance for children with disabilities. Children under the age of 18 are eligible if they meet Social Security's definition of disability for children and there are limited income and resources in the household. Social Security defines a disability as a physical or mental condition(s) that very seriously limits their activities and that condition must have lasted, or be expected to last, at least one year or result in death. If your child qualifies for SSI, they are eligible for Medicaid benefits.
Government Support Programs
Woman, Infants and Children’s (WIC)
WIC is a nutrition program for women who are pregnant, women who are breastfeeding (up until their child is age 1), women who are formula feeding (up until their child is 6 months old) and families with children younger than age 5. As a WIC client, you will have access to healthy food, one-on-one counseling with nutritionists, recipes, nutrition classes and breastfeeding support.
Supplemental Nutrition Assistance Program (SNAP)
The SNAP program assists low-income families in purchasing food. This program was previously known as “Food Stamps”. Once approved, funds will be loaded onto a Lone Star Card that can be used like a debit card at any grocery store that accepts SNAP.
Temporary Assistance for Needy Families (TANF)
TANF provides financial assistance to children and their families (parents or relatives who care for them). Assistance is for necessities such as food, clothing, transportation or housing. Assistance may be provided monthly or on a one time basis.
Early Childhood Intervention Services (ECI)
This is a statewide program within the Texas Health and Human Services Commission for families with children birth up to age 3, with developmental delays, disabilities or certain medical diagnoses that may impact development. ECI services support families as they learn how to help their children grow and learn.
Medicaid Waivers – State Waiver List
Waivers allow states to use Medicaid funds for long term home and community services for people with disabilities or special health care needs. Learn more about Texas Medicaid waivers.
Trying to find health insurance coverage as an adult? Check out Health Care Coverage Options and Adult Providers (childrens.com).
National Collaboratives with Parent Involvement
National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC)
This is a network of over 60 pediatric cardiology care centers across the United States, Canada and the United Kingdom, working together with families, clinicians, researchers and patients to improve outcomes for children with cardiovascular disease. The mission of NPC-QIC is to decrease mortality and improve quality of life for all infants with single ventricle congenital heart disease and their families.
Cardiac Neurodevelopment Outcome Collaborative (CNOC)
Cardiac Neurodevelopment Outcome Collaborative is a national initiative that is comprised of healthcare professionals and families that aims “to optimize neurodevelopment outcomes for individuals with pediatric and congenital heart disease through clinical, quality, and research initiatives” (cardiacneuro.org). Children’s Health Dallas is a participating site and we have a multidisciplinary team here who are active members.
Pediatric Acute Care Cardiology Collaborative (PAC3)
The mission of the Pediatric Acute Care Cardiology Collaborative is to improve cardiac acute care outcomes by focusing on quality, value, and experiences as appreciated by all stakeholders. Success will be measured by our ability to reduce acute care complications, adjusted hospital length of stay, and less than 7-day all-cause readmission rates, as well as improving patient, family, and staff experience. We will employ validated and sustainable quality improvement methods to achieve our aims. PAC³ will intentionally optimize partnerships and build alignment with other collaboratives, medical organizations, and parent-driven advocacy groups. Contact your social worker for assistance identifying resources in your area.
Terminology
It can be helpful to familiarize yourself with some common terminology our team members use at The Heart Center. This glossary will help you understand the various terms your care team may use to describe your child’s needs.
Angioplasty – an interventional procedure performed during cardiac catheterization that dilates or increases the size of blood vessels.
Atrial Septal Stent - an interventional procedure performed during cardiac catheterization that involves placement of a stent across the foramen ovale to keep the atrial septal open to allow blood to shunt freely across the septum.
Balloon Atrial Septostomy - an interventional procedure performed during cardiac catheterization where a balloon is used to open the atrial septum to allow the blood to flow freely across the septum.
Cardiac catheterization - The process of introducing a thin, flexible tube called a catheter into a vein or artery and guiding it to the heart chambers to measure pressures in the chambers, sample blood and take pictures (angiography). Your child will come to the hospital the morning of the procedure or be admitted the night before. Your child will receive sedation for the procedure and stay in the recovery room for a period of time. Most times your child will be sent home the day of or one to two days after the procedure.
Catheter devices - A stent is a small wire mesh tube. It is most often made of stainless steel. It can be placed in a narrowed blood vessel.
CBC - This stands for complete blood count.
CBC and Diff - Complete blood count including a differential or counts of the various types of blood cells.
Celsius vs. Fahrenheit - Celsius is the temperature scale used in medicine instead of Fahrenheit. Conversion examples: Fahrenheit to Celsius: Subtract 32 and halve the resulting number [(temp - 32)/2]. Celsius to Fahrenheit: Double the number and add 32 (2x temp + 32).
Chest X-ray - A noninvasive test. It provides pictures of structures in the chest such as the heart, lungs, ribs and bones. It also provides information on the size and position of the heart. A chest X-ray also can be used to check the position or placement of tubes such as breathing tubes, chest tubes, central lines or nasogastric tubes.
Chyle - A milky fluid consisting of lymph and emulsified fats formed from foods in the small intestine absorbed by the lacteals and passed into the blood through the thoracic duct.
Chylothorax - This is leakage of chyle into the pleural space (around the lung). Treatment begins with draining the fluid and eliminating fats from the diet. Nutrition will be consulted on the best formula or foods your child can eat should they develop a chylothorax.
Coil Closure of Collaterals - A procedure or technique used during cardiac catheterization or surgery using a coil, a device placed in blood vessels to occlude blood flow.
Computed Tomography Scan (CT Scan) - A CT scan is a study that shows cross-sectional pictures of the body. The CT scan shows in great detail the internal structures and any abnormalities. Some CT scans need contrast given in an IV or by mouth.
Congenital defect - This is any type of defect present at birth.
Congestive Heart Failure - A condition in which the heart is unable to pump the amount of needed blood to the body.
Ductus Arteriosus - A connection outside the heart of the fetus that is between the pulmonary artery and aorta. It normally closes after birth.
Echocardiogram (ECHO) - This noninvasive test uses ultrasound to provide a picture from sound waves that are reflected from an organ or tissue. A transducer is placed over the chest, and high-frequency sound waves bounce off the heart structures. They are transmitted back through the transducer to produce images of the heart structure and heart function.
Edema -This describes large amounts of fluid in the tissues of the body, more commonly called swelling.
Electrocardiogram (ECG) - This is a noninvasive test. Small special pieces of tape called electrodes are placed on the arms, legs and chest. These detect the electrical changes of the heart and are able to record them by a graphic tracing.
Electrolytes, BUN/Creatinine - Blood tests measure electrolytes (such as sodium, potassium and chloride), blood urea nitrogen (BUN) and creatinine levels and reflect how well the kidneys are working.
Extracorporeal Membrane Oxygenation (ECMO) - A type of life support system that may be used to help your baby’s lungs or heart function for a period of days or weeks while your baby heals. It is a special procedure that uses an artificial heart-lung machine similar to the cardiopulmonary bypass equipment used during open-heart surgery. ECMO also performs the work of the heart and lungs.
Fiber Optic Endoscopic Evaluation of Swallowing (FEES) - This test may also be recommended if there is vocal cord damage. It is used to evaluate stages of swallowing and if your baby can eat by mouth. It can be done at the bedside.
GERD - gastrointestinal esophageal reflux disease
GTT - The Latin meaning is guttae or drops. GTT is used in medicine as an abbreviation for a dosage form known as drips.
HGB/HCT - Hemoglobin and hematocrit (a.k.a. “crit”) are molecules that carry oxygen to the body.
Holter Monitor - This noninvasive test uses a portable ECG recorder that is worn by the patient for a specified period of time, usually 24 or 48 hours. This test evaluates how fast or slow the heart beats while the patient is involved in various activities, as well as sleeping. These activities are linked with the ECG tracing.
Hybrid Procedure - A catheterization and surgical procedure where bands are placed on the pulmonary arteries to decrease pulmonary blood flow and a stent is placed across the ductus arteriosus to provide “shunting of blood” from the aorta and pulmonary arteries.
Hypertrophy - The enlargement of a tissue or organ due to increase in the size of its cells.
Kilogram - A unit of measure that provides the weight of a person (1 kilogram = 2.2 pounds).
Magnetic Resonance Imaging (MRI) - A noninvasive test that uses magnetic waves to provide a three-dimensional view of the body without the use of radiation. This test is similar to a CT scan and may also require contrast. Newborns and small infants may need to be intubated for this study because it can take some time, and movement of any type may affect the results. A MRI cannot be done on patients with pacemakers, mechanical prosthetic valves or other medically implanted devices.
Mitral Valve - The heart valve between the left atrium and left ventricle that has two cusps or flaps.
Murmur - The noise made by blood flow that may or may not be normal.
P.O. - This is a medical term that means to take something by mouth.
Prostaglandins - These are hormone-like substances made from fatty acids that are found throughout the body tissues and thought to have important roles in tissue metabolism and blood flow. They can be given in an intravenous drip solution to keep the ductus arteriosus open in newborns with congenital heart defects.
Regurgitation - This is an abnormal backward flow of blood through a valve in the heart.
Shunt - This is the passage between two blood vessels or between the two sides of the heart. Placed during surgery, it diverts blood from one part of the body to another.
Tachycardia - This is the term for a fast heart rate for the age of the child.
Tachypnea - This is fast respiratory rate/breathing.
Tricuspid Valve - This heart valve between the right atrium and right ventricle has three cusps, or flaps.
Valve - This is an opening covered by membranous flaps between two chambers of the heart or between a chamber of the heart and blood vessel. Normally when a valve is closed, blood cannot pass through.
Vein - This series of vessels of the vascular system carries blood from various parts of the body back to the heart.
Ventricle (One) - Ventricle One of the two main pumping chambers of the heart. The left ventricle pumps oxygenated blood through the aorta to the body. The right ventricle pumps blood through the pulmonary artery to the lungs.
Video Fluoroscopic Swallow Study (VFSS) - This test may also be used to evaluate swallow dysfunction in your baby. It is done in radiology and requires the baby to be able to suck and swallow approximately 10 milliliters of a radiopaque liquid (usually barium) mixed with formula. As the baby sucks, images are recorded and analyzed to determine if the baby can safely swallow his or her formula without risk of aspiration.
Vocal Cords - structures in the larynx that are designed to vibrate and make sound when air passes through. Occasionally, damage to one or both vocal cords can occur during cardiac surgeries. Symptoms of vocal cord damage include a hoarse or weak cry, inability to eat or suck a bottle without coughing or choking, and possible pneumonia from aspirating fluid or food into the lungs. Vocal cord injury is diagnosed by a physician who specializes in ear, nose and throat disorders. Using an endoscope (a special camera), this ENT physician can directly view the vocal cords to determine movement and position.
Common medications
ACE Inhibitors/Vasodilators
ACE stands for angiotensin converting enzyme inhibitors. These medications work to stop the constriction of blood vessels and decrease the resistance, so it is easier for the blood to flow through the body’s organs. It also works to decrease blood pressure. Examples of ACE inhibitors are Enalapril and Captopril.
Possible side effects of ACE inhibitors include:
Dry, persistent cough
Weakness or swelling
Low blood pressure and dizziness
Antiarrhythmic
These medications treat irregular heartbeats. Examples of this type of medication include:
Amiodarone - This medication suppresses abnormal electrical conduction in the heart. It is important to have thyroid testing, liver functions tests and an eye exam while taking this medication.
Beta-blockers - This medication treats arrhythmias. It increases the non-excitable or refractory period of the atrioventricular (AV) node.
Calcium Channel Blockers - These medications decrease the calcium entry into cells to slow the heart.
Digoxin - This medication causes the heart to slow and pump blood more effectively. It increases the force of each contraction of the heart. This medication may also be used to treat rapid heart rate. Take Digoxin at the same time each day. There can be a risk of toxicity. If you miss a dose or your child throws up the Digoxin, it should not be re-dosed. Always consult your physician about dosage and medication.
Isuprel - This medication is used as a cardiac stimulant to treat an abnormally slow heart beat and increase the strength of the heart’s pumping.
Anticoagulants
This group of medicines is used to reduce the formation of clots in the bloodstream. They include Aspirin, Plavix, Coumadin, Lovenox, or Heparin. It is important when taking anticoagulants to take them at the same time each day and schedule regular blood tests. The goal is to make sure your child’s blood is within the target range. Always consult your physician about dosage and medication.
Anticoagulants are used to:
Reduce the risk of clot formation in artificial grafts (an example is a BT shunt)
Decrease the risk of clot formation secondary to blood moving slowly through the body due to the heart not pumping properly
Beta-blocker
This medication is used to treat arrhythmias. It increases the non-excitable or refractory period of the AV node. Examples of beta-blockers are Propranolol and Atenolol.
Diuretics
This group of medicines works to stimulate the kidneys. These medications include Lasix and Furosemide. Diuretics remove excess water and salt from the body to increase urine output. The different diuretics work on different parts of the kidney. It is important to call your cardiologist if you have diarrhea or vomiting while taking diuretics. With diarrhea and vomiting, there is an increased risk of dehydration.
Children’s Health℠ is here to help you better understand your child’s heart condition or illness. Here you’ll find resources and information to help you feel more comfortable during your time at The Heart Center. From a detailed heart terminology guide to a comprehensive list of who does what on your child’s care team, we offer a number of resources to guide you through your child’s care.
For information on what to expect for each step of your child’s care, such as preparing for surgery, what to bring for your hospital stay, frequently asked questions and more, visit What to Expect When Your Child Visits the Heart Center.
Our Programs
Adult Congenital Heart Disease Program
Our experienced pediatric and adult cardiologists offer comprehensive care and treatment for patients at every age – from newborns to teens and adults with congenital heart disease.
Biventricular Repair Program
On the resources page, the sentence requested will read as follows: Our Biventricular Repair Program is an innovative surgical procedure that provides 2 ventricle circulation for your child's heart.
Cardiac Catheterization and Intervention
We offer one of the most experienced programs in the country offering a safe, minimally invasive and reliable method for evaluating and treating certain forms of pediatric heart disease.
Cardiac Imaging
Our specialists use the most advanced technology to diagnose your child’s heart condition and create a tailored treatment plan.
Cardiac Neurodevelopment
For children with congenital heart conditions, we are recognized as specialists in identifying those at risk for developmental delays, providing evidenced-based interventions, and connecting the whole family to specialized inpatient and outpatient care and support. The Heart Center at Children’s Health is proud to be a part of the Cardiac Neurodevelopment Outcome Collaborative (CNOC) and the Pediatric Acute Care Cardiology Collaborative (PAC3).
Cardiothoracic Surgery
Our program is one of the most experienced in the country and is consistently ranked among the top in the nation for surgical outcomes.
Cardiovascular Genetics
The Pediatric Cardiovascular Genetics Clinic offers thorough evaluation and long-term management for infants and children with inherited cardiovascular disease. We treat the full spectrum of genetic disorders that can affect your child’s heart, no matter how complex those needs might be.
Congenital Coronary Anomaly Program
While rare, congenital defects in the heart’s coronary arteries can have serious consequences – especially for young athletes. We specialize in diagnosing and managing these often silent heart defects so children and adolescents can continue playing sports, safely.
Dilated Aorta Program
This multi-specialty program brings together cardiology, genetics, ophthalmology, orthopedics and more for a comprehensive approach to your child’s treatment.
Electrophysiology (Arrhythmia)
We are the only hospital in Texas using advanced imaging technology to create three-dimensional views of heart structures and electrical signals at the same time – allowing for faster and more thorough imaging while also minimizing your child’s radiation exposure.
Fetal Heart Program
Our dedicated fetal heart cardiologists work closely with parents, maternal-fetal specialists and an experienced care team to identify and diagnose congenital heart conditions with a high degree of accuracy.
Fontan Program
The Fontan Program establishes a center of excellence that streamlines lifelong care for Fontan-single ventricle patients. This program focuses on all aspects of a child’s physical and mental health, and addresses any social, learning and neuropsychological disorders.
Pulmonary Hypertension Program
Our Pulmonary Hypertension Program brings together a team of expert doctors – including pediatric cardiologists and pulmonologists – to evaluate your child from every angle and design a treatment plan that’s right for them.
Safe at Home
This program educates and empowers parents to help care for their infants with single ventricle defects who require staged surgical procedures. Since care plans can often be complex, we offer support and training that can help you feel comfortable when it’s time to go home. Contact your fetal care team to see if your child’s treatment plan includes this program.
Ventricular Assist Device (VAD) Program
As the only pediatric transplant and ventricular assist device (VAD) program in North Texas, our experienced team is turning heart failure into heart function. Some children are born with heart defects or have certain diseases that reduce their heart’s ability to pump blood. VADs are mechanical devices that help pump blood for the heart.
Learn more about The Heart Center, conditions treated and services provided.
Floors/Care units
The Heart Center at Children’s Health consists of six care units. Learn more below about each one to get more familiar with where your child will be receiving care.
Cardiac Intensive Care Unit (CICU) – Third Floor (D3)
Our experienced team in the cardiac intensive care unit (CICU) is committed to helping your child recover quickly and safely from heart surgery, catheter-based procedures, advanced treatments or complications from cardiac conditions. Rooms in the CICU allow for seamless care and monitoring of your child.
Each room includes a couch, recliner and storage cabinet.
Bathrooms are located inside and outside the CICU.
Two showers and a laundry room with small lockers are available outside the CICU.
A waiting area is outside the unit on floor three (D3).
Food is not allowed in the CICU. Eating at your child’s bedside is prohibited. All food must be stored outside of the CICU in the Family Pantry Room, which has a refrigerator, vending machine and fresh coffee available to parents.
Cardiology Acute Care Unit - 8th Floor (C8)
All rooms on the cardiology floor are private rooms and include:
Storage cabinet for belongings kept in the room
Private bathroom with a shower
A couch that pulls out to a double bed
Recliner
Food is allowed in this unit, and visitors can eat at your child’s bedside.
Heart Clinic
The Heart Clinic is where patient’s are seen for outpatient visits. It could be for routine follow up, post surgery, new diagnoses, etc. Each room is private and you will be assigned a nurse who will start the visit by taking your child’s vitals. Once all relevant information is collected, the provider meets with the family and the patient.
Cardiac Pre/Post Anesthesia Care Unit
This is where patients go prior to and sometimes after procedures to recover. The unit is run by anesthesiologists and is focused on pain management and fluid status of patients going into and coming out of surgery.
Operating Room (OR)
This is where various inpatient and outpatient surgical procedures are done.
Cardiac Catheterization Lab (Cath Lab)
Patients undergoing cardiac catheterization will come to the Cath Lab for the procedure. Your child will be admitted at the hospital either the morning of or the night before their procedure. Your child will receive sedation prior to the procedure, and stay in the recovery room for a period of time afterwards. Most times, your child will be sent home the day of or one to two days after the procedure.
Amenities
Food Storage
Food is not allowed in the cardiac intensive care unit (CICU), floor three (D3). All food must be stored in the Family Pantry Room outside of the unit. This room has a refrigerator, microwave, vending machine, water, ice and coffee. All items left in the refrigerator need to be labeled with the patient’s name. We do not have pantry storage.
The cardiology unit, floor eight (C8) has two kitchenettes. Both have a refrigerator where you can store food labeled with the patient parent’s information, a microwave, water and ice for patient families.
Laundry facilities
There are two free laundry facilities located outside of the cardiac intensive care unit (CICU), floor three (D3) and the cardiology unit, floor eight (C8). You may bring your own detergent, or we have detergent available for purchase.
Lactation room
There is a lactation room, located on D3 that all families from the cardiac unit (C8) and CICU (D3) are welcome to use.
Family waiting area
The family waiting area has a TV, chairs and recliners.
Care team
You and our medical experts are one team, helping your child on their journey to healing. That’s why we encourage you to participate in your child’s care through open communication with your child’s care team. Every person who assists in your child’s care will announce who they are and what they’re there to do.
We want you to feel comfortable interacting with your child’s care team so you can advocate for your child’s needs and understand your child’s care plan. To better understand your child's journey to healing, it is important to know what each person does.
Attending physicians are experts in their field of medicine or surgery. They may also oversee the practice and education of medical students and residents.
Advance practice providers (APPs) are health care providers who are not physicians, but perform medical activities typically done by a physician. APPs include Physician Assistants (PAs), Advanced Practice Registered Nurses (APRNs) such as Nurse Practitioners (NPs), Certified Registered Nurse Anesthetists (CRNAs), Certified Nurse Midwives (CNMs), and Clinical Nurse Specialists (CNSs)
Cardiac anesthesiologists use anesthesia to make sure your child is comfortable. The anesthesiologist will make sure your child is not awake or experiencing any pain during surgery. They will watch your child closely while in the operating room.
Cardiac nurses specialize in caring for patients with heart conditions.
Cardiac radiologists use imaging techniques such as X-rays, ultrasound (echocardiograms), CT (computed tomography) scans and MRI (magnetic resonance imaging) scans to diagnose and monitor heart problems.
Cardiologists are medical doctors that specialize in heart conditions.
Cardiothoracic surgeons are medical doctors who specialize in surgical procedures of the heart, lungs, esophagus, and other organs in the chest.
Cardiac intensivists are medical doctors that specialize in cardiac critical care in the Cardiac Intensive Care Unit (CICU).
Fellows are fully credentialed physicians who are in the process of completing further training in a specialty under the supervision of an attending physician.
Fetal cardiologists are pediatric cardiologists with special expertise in the diagnosis and management of problems that affect a baby's heart, both before and after birth.
Fetal coordinators help families navigate through the entire care journey. Fetal coordinators help families create the best plans for pregnancy, delivery and care of their baby.
Interns are medical students that have not yet graduated medical school.
Interventional cardiologists use various diagnostic tools and imaging techniques to measure cardiovascular functions such as blood pressure and blood flow in major arteries throughout the body and within the different chambers of the heart.
Perfusionists operate a heart-lung machine (bypass), which is an artificial blood pump, which propels oxygenated blood to the patient's tissues while the surgeon operates on the heart.
Residents are physicians who have completed medical school and are doing two to seven years of training.
Respiratory therapists (RT) provide breathing and oxygen support to patients who have difficulty breathing and getting enough oxygen into their blood.
Sonographers use imaging equipment and sound waves to form images of many parts of the body, known as ultrasounds.
Resources and support
Children’s Health support services
Care coordinators
The Heart Center has Care Coordinators who have been assigned to patients to offer consistency in care management and help with your child’s discharge needs. Care Coordinators make referrals for home care services and transitional care facilities, arrange home equipment and supplies, set up ambulance transport if needed and coordinate insurance coverage for your child’s discharge needs.
Child Life
The Child Life Department continues to work alongside the medical staff to ensure a positive experience for our patients and families. From therapeutic arts to pet therapy and more. The Child Life specialist focuses on your child’s developmental growth and helps your child maintain a sense of normalcy during what can be a very abnormal time. The child life specialist can educate you in ways to connect to and interact with your child even while he or she is undergoing intense medical treatment. They are also available to prepare and assist siblings with coping in the hospital setting.
Financial Assistance
To help children receive the care they need, Children’s Health provides financial assistance for medically necessary services. Learn more about eligibility, the application process and services available to patients and families.
Lactation Support
Whatever your plans – breastfeeding, pumping, bottle feeding or some combination – our multidisciplinary care team supplies the evaluation, education and support needed to meet your goals. Working together, our highly experienced team develops a personalized feeding plan for mom and baby.
Language and Interpreter Services
The Heart Center has two dedicated Spanish interpreters available in the clinic and on the Cardiology Units.
Music Therapy
Board-certified music therapists use a variety of musical expression to support children throughout their hospitalization.
Occupational Therapy
Your child may need occupational therapy because they are born with a condition that affects their ability to care for themselves, play, rest as needed, or attend school. Occupational therapists work to improve your child’s ability to participate in routine activities.
Pastoral and Spiritual Care
Children’s Health provides Chaplain services 24 hours a day to support our patients and their loved ones. Should a patient family wish to request a visit from the clergy of their particular faith community, this request can be made by contacting the unit Chaplain or Spiritual Care team.
Pet Therapy
Our therapy dogs provide comfort to patients who are coping with an unfamiliar environment or challenging situation.
Physical Therapy
Physical therapy is a planned program of activities that will help improve your child’s movement or pain. A licensed physical therapist examines your child and plans treatment based on your doctor’s request and the therapist’s evaluation of your child’s needs.
Psychologists
Pediatric psychologists help children and families cope when they are in the hospital. They can also help when children are feeling sad or having a hard time with being in the hospital. Pediatric psychologists also help families learn different ways to help their child when they go home from the hospital and go back to school. Pediatric psychologists can meet with each patient and family during outpatient and inpatient visits.
School Services
When a child has an illness, is in the hospital or is returning home, it is important that they continue with as many normal activities as possible. This includes school. The School Services department at Children’s Health provides help for your child so they can keep up with their school needs. We offer school support for our patients through local school districts, on all campuses.
Social Work
The Social Services department at Children’s Health helps families find the resources and services they need such as crisis prevention, family counseling, support groups, home health care planning and more. Contact our professional licensed social workers 24/7. Your family will have the same social worker from diagnosis throughout care.
The Heart Center has both outpatient and inpatient social workers to support you and your family through your pregnancy, hospitalization and follow-up care at Children’s Health. These social workers, dedicated solely to our families seeking cardiac care, are specially trained and licensed to provide support to families coping with illness, assess patient and family psychosocial needs, provide crisis and therapeutic counseling, prepare families for transition from hospital to home and educate and link families to community resources. Our team of social workers focuses on the unique needs of every family at each visit to the hospital.
Speech Therapy
A speech and language pathologist provides therapy to help your child overcome problems that affect speech and swallowing. Our speech pathologists are specialists in caring for children and adolescents, so they can assess your child’s issues in relation to typical development and skills for children their age.
Community Resources and Support
Support Groups
Conquering CHD
Conquering CHD exists to conquer the most common birth defect, congenital heart disease. They engage, listen, learn, support, and act. They create visibility and empower all impacted by CHD. They accomplish this through awareness, knowledge, support, community and research.
Mended Little Hearts
Mended Little Hearts is a support program for parents of children with heart defects and heart disease. The Dallas branch offers resources, peer-to-peer support, monthly gatherings, hospital visits, Bravery Bags and other activities to help families find answers, healing and hope.
Learn more about the Dallas chapter, Mended Little Hearts of Dallas.
Sisters by Heart
This volunteer-led organization supports and empowers families dealing with a single ventricle heart defects such as:
Hypoplastic Left Heart Syndrome
Tricuspid Atresia (TA)
Double Inlet Left Ventricle (DILV)
Atrioventricular Canal Defect (AV)
Pulmonary Atresia with Intact Ventricular Septum (PA-IVS)
Government Insurance Programs
Children with Special Healthcare Needs (CSHCN)
The CSHCN program provides health benefits and family support services to children 20 and younger who have special health care needs and people with cystic fibrosis of any age. To be eligible for this program, a child must live in Texas, be 20 years old or younger (or any age with a diagnosis of cystic fibrosis), have an income level at or below 200% of the federal poverty line and have a qualifying medical condition. The Children’s Health Financial Counseling Office can assist in screening your child for eligibility as well as with the application process.
Health Insurance Premium Payment Reimbursement Program (HIPP)
This is a Texas Medicaid program that helps families pay for employer sponsored health insurance premiums. Those eligible for the program have a family member with private health insurance and at least one person who gets Medicaid. Medicaid will pay the family’s private health insurance premiums if the total cost of that insurance is less than the total cost of care with Medicaid. If approved, Medicaid may pay the private health insurance costs for the entire family and not just for the family members who get Medicaid. The family will get services through the private health insurance plan.
Institutional Supplemental Security Income (SSI) for Children
If your child has been in the hospital for a whole calendar month, they may be eligible for Institutional SSI and Medicaid depending on length of stay and diagnosis. You must apply for Institutional SSI prior to discharge to be eligible. The Children’s Health Financial Counseling Office can assist with the initial application.
Medicaid Waiver Program
A Medicaid waiver allows the state to assist individuals and provide some long-term services to those with disabilities or elderly citizens who are eligible for Medicaid. Medicaid waivers override certain rules for how Medicaid funding can be used. If an individual meets eligibility requirements, they can receive services they need in their own homes or other community settings, instead of having to go into a nursing facility or institution. You may apply and/or qualify for both Medicaid benefits, as well as Medicaid Waiver programs.
Medicaid and Children’s Health Insurance Plan (CHIP)
Children's Medicaid is a health care program for children in low-income families. CHIP is a health care program for children whose families earn too much to get Medicaid but cannot afford health insurance. To be eligible for either program, a child must be age 18 or younger (in some cases children with disabilities age 19 or 20 can get Medicaid), a Texas resident and a U.S. citizen or qualified non-citizen. The Children’s Health Financial Counseling Office can assist in screening your child for eligibility as well as with the application process. You may also apply by calling 211 or visiting Your Texas Benefits.
Medicaid Buy-In
The Medicaid Buy-In for Children program offers Medicaid services to children with disabilities in families that make too much money to qualify for Medicaid. To be eligible, your child must be age 18 or younger, have a disability, and be a U.S. citizen or qualified non-citizen. If you receive Medicaid Buy-In, you may be required to pay a monthly payment based on your family’s income, health insurance availability through your employer and utilization of other programs. The Children’s Health Financial Counseling Office can assist in screening your child for eligibility as well as with the application process.
Medically Needy with Spend Down Program
The Medically Needy with Spend Down program helps both families with children age 18 and younger and pregnant women who do not qualify for Medicaid to pay for unpaid medical expenses. To qualify, an individual or family subtracts their health care expenses from their income until they meet the program’s income and asset limits, also called “spending down.” If approved, clients enrolled through this program submit their paid and unpaid medical bills each month. Medical bills greater than the monthly spend-down amount are covered or reimbursed by Medicaid.
Supplemental Security Income (SSI)
SSI provides monthly assistance for children with disabilities. Children under the age of 18 are eligible if they meet Social Security's definition of disability for children and there are limited income and resources in the household. Social Security defines a disability as a physical or mental condition(s) that very seriously limits their activities and that condition must have lasted, or be expected to last, at least one year or result in death. If your child qualifies for SSI, they are eligible for Medicaid benefits.
Government Support Programs
Woman, Infants and Children’s (WIC)
WIC is a nutrition program for women who are pregnant, women who are breastfeeding (up until their child is age 1), women who are formula feeding (up until their child is 6 months old) and families with children younger than age 5. As a WIC client, you will have access to healthy food, one-on-one counseling with nutritionists, recipes, nutrition classes and breastfeeding support.
Supplemental Nutrition Assistance Program (SNAP)
The SNAP program assists low-income families in purchasing food. This program was previously known as “Food Stamps”. Once approved, funds will be loaded onto a Lone Star Card that can be used like a debit card at any grocery store that accepts SNAP.
Temporary Assistance for Needy Families (TANF)
TANF provides financial assistance to children and their families (parents or relatives who care for them). Assistance is for necessities such as food, clothing, transportation or housing. Assistance may be provided monthly or on a one time basis.
Early Childhood Intervention Services (ECI)
This is a statewide program within the Texas Health and Human Services Commission for families with children birth up to age 3, with developmental delays, disabilities or certain medical diagnoses that may impact development. ECI services support families as they learn how to help their children grow and learn.
Medicaid Waivers – State Waiver List
Waivers allow states to use Medicaid funds for long term home and community services for people with disabilities or special health care needs. Learn more about Texas Medicaid waivers.
Trying to find health insurance coverage as an adult? Check out Health Care Coverage Options and Adult Providers (childrens.com).
National Collaboratives with Parent Involvement
National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC)
This is a network of over 60 pediatric cardiology care centers across the United States, Canada and the United Kingdom, working together with families, clinicians, researchers and patients to improve outcomes for children with cardiovascular disease. The mission of NPC-QIC is to decrease mortality and improve quality of life for all infants with single ventricle congenital heart disease and their families.
Cardiac Neurodevelopment Outcome Collaborative (CNOC)
Cardiac Neurodevelopment Outcome Collaborative is a national initiative that is comprised of healthcare professionals and families that aims “to optimize neurodevelopment outcomes for individuals with pediatric and congenital heart disease through clinical, quality, and research initiatives” (cardiacneuro.org). Children’s Health Dallas is a participating site and we have a multidisciplinary team here who are active members.
Pediatric Acute Care Cardiology Collaborative (PAC3)
The mission of the Pediatric Acute Care Cardiology Collaborative is to improve cardiac acute care outcomes by focusing on quality, value, and experiences as appreciated by all stakeholders. Success will be measured by our ability to reduce acute care complications, adjusted hospital length of stay, and less than 7-day all-cause readmission rates, as well as improving patient, family, and staff experience. We will employ validated and sustainable quality improvement methods to achieve our aims. PAC³ will intentionally optimize partnerships and build alignment with other collaboratives, medical organizations, and parent-driven advocacy groups. Contact your social worker for assistance identifying resources in your area.
Terminology
It can be helpful to familiarize yourself with some common terminology our team members use at The Heart Center. This glossary will help you understand the various terms your care team may use to describe your child’s needs.
Angioplasty – an interventional procedure performed during cardiac catheterization that dilates or increases the size of blood vessels.
Atrial Septal Stent - an interventional procedure performed during cardiac catheterization that involves placement of a stent across the foramen ovale to keep the atrial septal open to allow blood to shunt freely across the septum.
Balloon Atrial Septostomy - an interventional procedure performed during cardiac catheterization where a balloon is used to open the atrial septum to allow the blood to flow freely across the septum.
Cardiac catheterization - The process of introducing a thin, flexible tube called a catheter into a vein or artery and guiding it to the heart chambers to measure pressures in the chambers, sample blood and take pictures (angiography). Your child will come to the hospital the morning of the procedure or be admitted the night before. Your child will receive sedation for the procedure and stay in the recovery room for a period of time. Most times your child will be sent home the day of or one to two days after the procedure.
Catheter devices - A stent is a small wire mesh tube. It is most often made of stainless steel. It can be placed in a narrowed blood vessel.
CBC - This stands for complete blood count.
CBC and Diff - Complete blood count including a differential or counts of the various types of blood cells.
Celsius vs. Fahrenheit - Celsius is the temperature scale used in medicine instead of Fahrenheit. Conversion examples: Fahrenheit to Celsius: Subtract 32 and halve the resulting number [(temp - 32)/2]. Celsius to Fahrenheit: Double the number and add 32 (2x temp + 32).
Chest X-ray - A noninvasive test. It provides pictures of structures in the chest such as the heart, lungs, ribs and bones. It also provides information on the size and position of the heart. A chest X-ray also can be used to check the position or placement of tubes such as breathing tubes, chest tubes, central lines or nasogastric tubes.
Chyle - A milky fluid consisting of lymph and emulsified fats formed from foods in the small intestine absorbed by the lacteals and passed into the blood through the thoracic duct.
Chylothorax - This is leakage of chyle into the pleural space (around the lung). Treatment begins with draining the fluid and eliminating fats from the diet. Nutrition will be consulted on the best formula or foods your child can eat should they develop a chylothorax.
Coil Closure of Collaterals - A procedure or technique used during cardiac catheterization or surgery using a coil, a device placed in blood vessels to occlude blood flow.
Computed Tomography Scan (CT Scan) - A CT scan is a study that shows cross-sectional pictures of the body. The CT scan shows in great detail the internal structures and any abnormalities. Some CT scans need contrast given in an IV or by mouth.
Congenital defect - This is any type of defect present at birth.
Congestive Heart Failure - A condition in which the heart is unable to pump the amount of needed blood to the body.
Ductus Arteriosus - A connection outside the heart of the fetus that is between the pulmonary artery and aorta. It normally closes after birth.
Echocardiogram (ECHO) - This noninvasive test uses ultrasound to provide a picture from sound waves that are reflected from an organ or tissue. A transducer is placed over the chest, and high-frequency sound waves bounce off the heart structures. They are transmitted back through the transducer to produce images of the heart structure and heart function.
Edema -This describes large amounts of fluid in the tissues of the body, more commonly called swelling.
Electrocardiogram (ECG) - This is a noninvasive test. Small special pieces of tape called electrodes are placed on the arms, legs and chest. These detect the electrical changes of the heart and are able to record them by a graphic tracing.
Electrolytes, BUN/Creatinine - Blood tests measure electrolytes (such as sodium, potassium and chloride), blood urea nitrogen (BUN) and creatinine levels and reflect how well the kidneys are working.
Extracorporeal Membrane Oxygenation (ECMO) - A type of life support system that may be used to help your baby’s lungs or heart function for a period of days or weeks while your baby heals. It is a special procedure that uses an artificial heart-lung machine similar to the cardiopulmonary bypass equipment used during open-heart surgery. ECMO also performs the work of the heart and lungs.
Fiber Optic Endoscopic Evaluation of Swallowing (FEES) - This test may also be recommended if there is vocal cord damage. It is used to evaluate stages of swallowing and if your baby can eat by mouth. It can be done at the bedside.
GERD - gastrointestinal esophageal reflux disease
GTT - The Latin meaning is guttae or drops. GTT is used in medicine as an abbreviation for a dosage form known as drips.
HGB/HCT - Hemoglobin and hematocrit (a.k.a. “crit”) are molecules that carry oxygen to the body.
Holter Monitor - This noninvasive test uses a portable ECG recorder that is worn by the patient for a specified period of time, usually 24 or 48 hours. This test evaluates how fast or slow the heart beats while the patient is involved in various activities, as well as sleeping. These activities are linked with the ECG tracing.
Hybrid Procedure - A catheterization and surgical procedure where bands are placed on the pulmonary arteries to decrease pulmonary blood flow and a stent is placed across the ductus arteriosus to provide “shunting of blood” from the aorta and pulmonary arteries.
Hypertrophy - The enlargement of a tissue or organ due to increase in the size of its cells.
Kilogram - A unit of measure that provides the weight of a person (1 kilogram = 2.2 pounds).
Magnetic Resonance Imaging (MRI) - A noninvasive test that uses magnetic waves to provide a three-dimensional view of the body without the use of radiation. This test is similar to a CT scan and may also require contrast. Newborns and small infants may need to be intubated for this study because it can take some time, and movement of any type may affect the results. A MRI cannot be done on patients with pacemakers, mechanical prosthetic valves or other medically implanted devices.
Mitral Valve - The heart valve between the left atrium and left ventricle that has two cusps or flaps.
Murmur - The noise made by blood flow that may or may not be normal.
P.O. - This is a medical term that means to take something by mouth.
Prostaglandins - These are hormone-like substances made from fatty acids that are found throughout the body tissues and thought to have important roles in tissue metabolism and blood flow. They can be given in an intravenous drip solution to keep the ductus arteriosus open in newborns with congenital heart defects.
Regurgitation - This is an abnormal backward flow of blood through a valve in the heart.
Shunt - This is the passage between two blood vessels or between the two sides of the heart. Placed during surgery, it diverts blood from one part of the body to another.
Tachycardia - This is the term for a fast heart rate for the age of the child.
Tachypnea - This is fast respiratory rate/breathing.
Tricuspid Valve - This heart valve between the right atrium and right ventricle has three cusps, or flaps.
Valve - This is an opening covered by membranous flaps between two chambers of the heart or between a chamber of the heart and blood vessel. Normally when a valve is closed, blood cannot pass through.
Vein - This series of vessels of the vascular system carries blood from various parts of the body back to the heart.
Ventricle (One) - Ventricle One of the two main pumping chambers of the heart. The left ventricle pumps oxygenated blood through the aorta to the body. The right ventricle pumps blood through the pulmonary artery to the lungs.
Video Fluoroscopic Swallow Study (VFSS) - This test may also be used to evaluate swallow dysfunction in your baby. It is done in radiology and requires the baby to be able to suck and swallow approximately 10 milliliters of a radiopaque liquid (usually barium) mixed with formula. As the baby sucks, images are recorded and analyzed to determine if the baby can safely swallow his or her formula without risk of aspiration.
Vocal Cords - structures in the larynx that are designed to vibrate and make sound when air passes through. Occasionally, damage to one or both vocal cords can occur during cardiac surgeries. Symptoms of vocal cord damage include a hoarse or weak cry, inability to eat or suck a bottle without coughing or choking, and possible pneumonia from aspirating fluid or food into the lungs. Vocal cord injury is diagnosed by a physician who specializes in ear, nose and throat disorders. Using an endoscope (a special camera), this ENT physician can directly view the vocal cords to determine movement and position.
Common medications
ACE Inhibitors/Vasodilators
ACE stands for angiotensin converting enzyme inhibitors. These medications work to stop the constriction of blood vessels and decrease the resistance, so it is easier for the blood to flow through the body’s organs. It also works to decrease blood pressure. Examples of ACE inhibitors are Enalapril and Captopril.
Possible side effects of ACE inhibitors include:
Dry, persistent cough
Weakness or swelling
Low blood pressure and dizziness
Antiarrhythmic
These medications treat irregular heartbeats. Examples of this type of medication include:
Amiodarone - This medication suppresses abnormal electrical conduction in the heart. It is important to have thyroid testing, liver functions tests and an eye exam while taking this medication.
Beta-blockers - This medication treats arrhythmias. It increases the non-excitable or refractory period of the atrioventricular (AV) node.
Calcium Channel Blockers - These medications decrease the calcium entry into cells to slow the heart.
Digoxin - This medication causes the heart to slow and pump blood more effectively. It increases the force of each contraction of the heart. This medication may also be used to treat rapid heart rate. Take Digoxin at the same time each day. There can be a risk of toxicity. If you miss a dose or your child throws up the Digoxin, it should not be re-dosed. Always consult your physician about dosage and medication.
Isuprel - This medication is used as a cardiac stimulant to treat an abnormally slow heart beat and increase the strength of the heart’s pumping.
Anticoagulants
This group of medicines is used to reduce the formation of clots in the bloodstream. They include Aspirin, Plavix, Coumadin, Lovenox, or Heparin. It is important when taking anticoagulants to take them at the same time each day and schedule regular blood tests. The goal is to make sure your child’s blood is within the target range. Always consult your physician about dosage and medication.
Anticoagulants are used to:
Reduce the risk of clot formation in artificial grafts (an example is a BT shunt)
Decrease the risk of clot formation secondary to blood moving slowly through the body due to the heart not pumping properly
Beta-blocker
This medication is used to treat arrhythmias. It increases the non-excitable or refractory period of the AV node. Examples of beta-blockers are Propranolol and Atenolol.
Diuretics
This group of medicines works to stimulate the kidneys. These medications include Lasix and Furosemide. Diuretics remove excess water and salt from the body to increase urine output. The different diuretics work on different parts of the kidney. It is important to call your cardiologist if you have diarrhea or vomiting while taking diuretics. With diarrhea and vomiting, there is an increased risk of dehydration.
