Heart Disease

What is heart disease or cardiac disease?

Families reading

Heart disease, also called cardiac disease, is a heart defect. The word cardiac refers to the heart. Cardiac or heart disease means the heart muscle can’t properly deliver oxygen and other essentials to the organs and tissues. Heart disease includes many different conditions. The heart pumps blood all over the body to bring oxygen and nutrients to the cells of the body.

What are some common signs of heart disease?

Here are some common signs:

  • Your child tires easily or has problems breathing.
  • Your child has hypoxic spells (child turns blue, pale or grayish in color and has shortness of breath, becomes limp or even passes out).
  • In serious cases a child may have chest pains, dizziness and/or the heart may stop beating.
  • If your child has a pacemaker and it stops working properly, he or she can pass out, complain of dizziness, headaches, tire easily or fall asleep. If your child complains of these warning signs and has a pacemaker, see a doctor immediately.

Adapted from Krajicek et al & Fletcher-Janzen & Reynolds

What can I do to help my child?

You have made an important first step by reading more information on cardiac/heart disease. Talk with other parents of children with heart disease who have gone through what you are going through now and perhaps can help. You also can get help from parent support groups. Click below for a list of local heart-related support groups.

Remember that the more you know about your child’s heart condition, the better you can help your child. Below are some checklists of things to help your child. Remember that you are not alone.

Checklists of things I can do to help my child with heart disease:

Getting Started


Get my child’s hearing evaluated (tested):

If your child is between ages birth to 3 years old and seems to have a problem hearing, speaking or learning, your child can be evaluated by a team of experts through the Early Steps program for free. Your child may be eligible for free services. Contact a center close to your home.

Early Steps


For more information or to make a referral to Early Steps, please call (800) 218-0001

or visit the contact list :http://www.floridahealth.gov/AlternateSites/CMS-Kids/home/contact/earlysteps.pdf

If your child is 3-5 years old and has problems with hearing, learning, speaking, playing, seeing and/or walking, he or she can still receive free testing through Child Find/Florida Diagnostic and Learning Resources System (FDLRS). Testing also is provided for special-education programs.

Florida’s FDLRS Child Find


Statewide Contact:

Janie Register

Bureau Liaison

Florida Department of Education

(850) 245-0476

E-mail: Janie.Register@fldoe.org

Contact list: http://www.fdlrs.org/images/pdf/contactlists/ChildFindContactList5.5.15.pdf

Contact Children’s Medical Services (CMS):

CMS local offices and sometimes will refer children to medical centers that work with CMS. They provide services to help care for children with disabilities, special needs or major medical conditions. These services can range from early intervention programs such as Early Steps, to ones for a specific medical condition such as a heart condition.

Children’s Medical Services


Main Phone: (850) 245-4200

Contact Form :http://www.floridahealth.gov/AlternateSites/CMS-Kids/home/contact/central_office.html

Get my child evaluated for related developmental delays:

Sometimes a heart problem or the surgeries to fix one can cause your child to have a “developmental delay.” Such a developmental delay means your child may take longer to learn to walk, speak or learn to write. Your child may even have problems with learning.

Work with my child’s service providers:

A service provider can be your doctors, nurses, teachers, social worker or any professional. Remember that you know more about your child than anyone else and are the main influence in your child’s life. Some tips for speaking with service providers:

  • Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have or about anything you don’t understand.
  • If you think your child needs something in particular, keep asking until you get it or until you learn why it is not needed.
  • If your child’s heart problem is severe, you may need to use the homebound service to provide an education for your child.

If your child is in school, he or she may need a Section 504 educational plan to make sure all educational and health care needs are met. Section 504 is part of the Rehabilitation Act of 1973. This federal law allows qualified children with a disability to have special services or supports in their schools. For more information on Section 504, see this website: http://www.hhs.gov/ocr/504.html.

Your child may be qualified for more services under IDEA. Check with your child’s school. For more information on IDEA, see this website:http://www.parentcenterhub.org/repository/idea/

Get more information:

Visit more websites. Read a book. Watch a video on heart disease. Include your child and family. Talk with another parent.

Get trained in CPR

(an emergency procedure that you can use to help a child to start breathing again) and in AED (using a device called a defibrillator that can restart a heart that has stopped): All adults entrusted with your child’s safety — including you — should be trained in how to give CPR (stands for cardiopulmonary resuscitation) and in AED (stands for automated external defibrillator) because immediate treatment may be needed if heart failure is a possibility.

Have my child wear a Medic Alert bracelet:

This is important because in case of an emergency vital information on your child’s condition is available.

Give my contact numbers to all school personnel and caregivers:

Contact information for you and your spouse and your child’s doctor should be given to all adults entrusted with your child’s care and safety.

Talk with my child’s teacher(s).

Ask the teacher to talk with you often about how your child is doing at school. One way to stay in touch is to use a notebook that goes between home and school. You also can stay in touch through e mail or regular phone calls. Be sure the teacher knows about any changes in your child’s condition that might affect schoolwork or learning.

If your child is having trouble with schoolwork because of absences or other problems, ask your child’s teacher to:

  • Provide advance schedules or tools to help your child stay on track
  • Discuss appropriate accommodations/modifications* or changes to the curriculum with your child’s school. (Your child may be eligible for these through Section 504 discussed above.)

Some accommodations that may be appropriate for your child are:

  • Providing a rest period if your child tires too quickly or becomes breathless.
  • Provide a set of textbooks at home. Carrying heavy bags of books may be difficult for your child.
  • Plan and discuss the length of the school day before your child goes to school. A full day of classes may be too exhausting.
  • Allow your child timely and easy access to the bathroom. The side effects of some medications can make your child go to the bathroom often.
  • Plan other things to do for your child during physical education (alternative physical activities). Watching from the sidelines is not a good option for your child. If your child is taking blood-thinning medications, remember to tell the teacher to have your child avoid contact sports. Contact sports put the child at risk for bleeding.

Teach my child some strategies for slowing the heart rate:

Some strategies to slow or stop the fast rate include deep breathing, making the ears pop or drinking a cold, fizzy drink

Strategies from the Children’s Heart Federation, 2005

Include my child in all parts of daily life.

Encourage your child to participate in family fun, recreation activities and play that can be done safely.

For ideas on how to play with your young child, go to www.Parenthood.com

How can I deal with all this?

First of all you need to take care of yourself!

Having a child with a serious medical condition is stressful. It is easy to get overwhelmed.

Remember that before you can take care of anyone else, be kind to yourself. Taking care of yourself is not selfish, but instead necessary. You can’t help your child, if you are overworked and overstressed.

Figure out how to take care of your own needs. The next time friends or family say, “What can I do to help?” let them babysit or lend a hand so you can have some time to yourself. Here are some things you can do to “recharge your batteries:”

  • Do something to make you feel happy, e.g., going out with a loved one or friends, taking a long bath or a creative project.
  • Exercise also is vital for your mind, body and spirit — for example, long walks, lifting weights, bike riding or an aerobic class. Try to make sure it is fun.
  • Talk with other parents of children with similar concerns. Others can help with practical tips, cheer you up and be a source of strength.
  • Stay hopeful. According to the American Heart Association, “If your child is born with a heart defect today, the chances are better than ever that the problem can be overcome and that a normal life will follow.”

What are some other ways to describe heart disease?

Different kinds of cardiac diseases and heart problems include:

  • Congenital heart defects or congenital malformations: These problems happen while the heart is developing and before the baby is born. Often the mother is unaware of this occurring when she is pregnant.
  • Arrhythmias are irregular heartbeats: Your child’s heart beats too slow, too fast or has an abnormal rhythm (timing). It can happen at birth or develop later as your child grows.
  • Heart block: This happens when there is a problem with the electrical impulses causing the heart to beat are slowed or blocked along the pathway between the upper and lower chambers of the heart.

Krajicek, Hertzberg, Sandall, & Anastasiow, 2004; American Heart Association, 2005; Fletcher-Janzen & Reynolds, 2003

Do many children have heart disease?

Sharing toys

Eight of every 100 babies will be born with some type of heart disease — most often mild. The cause of the problem is usually unknown. Most children born with heart disease can live normal lives if they get modern medical and health care.

American Heart Association, 2005 & Fletcher-Janzen & Reynolds

What does heart disease mean for the health of my child?

Very mild cases of heart disease may only need to be watched to make sure they never develop into a problem. Some heart conditions can be controlled with medication. Some may require surgery to put in a pacemaker. A pacemaker is an electronic device that helps make the heart beat regularly.

Severe heart conditions often require surgery and, in some cases, several operations over the years. In a very small number of cases, a heart transplant becomes the only option.

Children with heart disease often experience limited physical stamina, which means they tire faster than other children. Your child may need to limit exercise at home and at school, and take advantage of adaptive physical education at school. Make sure your school is aware if your child tires easily.

Children’s Heart Federation, 2005 & Fletcher- Janzen & Reynolds, 2003

What does heart disease mean for my child’s intelligence and learning?

Most children with heart disease lead completely ordinary lives. Some may need extra help.

Some children with congenital heart disease (born with heart disease) may have other problems, too. For instance, some children may not have developed social skills and act younger than other children their age.

If your child has just had an operation, he or she may have trouble concentrating for long periods of time. A hospital stay or lengthy treatments also can cause your child to feel isolated from friends. Children may feel “weird” about going back to school, or depressed. Remember that this is not a disability and can be overcome with help.

Children’s Heart Federation, 2005 & American Heart Association, 2005

Who are some professionals my child may need to see?

Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she work with children.

Pediatric cardiologist: A doctor who specializes in treating children with heart disease.

Pediatric heart surgeon: A doctor who specializes in performing surgery on children.

Pediatric pulmonologist: A doctor who specializes in treating children with lung-related illnesses or conditions.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.

What are some website where I can read more about heart disease?

American Heart Association http://www.americanheart.org/ Helpful information on various heart conditions.

NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/heartdiseases.html A comprehensive source of links, this is a service of the U.S. National Library of Medicine and the National Institutes of Health.

Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for children, teens and parents of children with medical challenges.

Medicine.net http://www.medicinenet.com/heart/focus.htm Medicine.net is an online, health care media publishing company.

What are some special books I can read with my child?

How does your heart work? By Don L. Curry, Jayne Waddell (contributor), Jeanne, Ph.D. Clidas (contributor) (2003). Scholastic Inc. A simple but informative book on the heart and circulatory system. (Ages 4-8)

Pump the Bear by Gisella Whittington. Brown Books Publishing. A story about a special bear, Pump, born with a broken heart. He is helped by his family, doctors and guardian angel to recover. He realizes he is blessed with a special heart. Written for young children.