Below are some links that our families have found helpful

CaringBridge – CaringBridge is a website that helps keep loved ones informed during
difficult times. In return, family and friends give patient and caregiver support through
guestbook messages. You can create your own free caringbridge webpage by visiting:
Caring Bridge

Levine Children’s Hospital – the doors opened in October 2007. This new children’s
hospital combines the medical expertise the community already relies on with a spectacular new state-of-the-art facility designed to care for the physical and emotional needs of children and their families. Visit the website at:
Levine Children's Hospital

Sanger Heart & Vascular Institute- includes an impressive staff of adult and pediatric cardiologists, and cardiac, thoracic and vascular surgeons. With numerous locations in both North and South Carolina, Sanger offers convenient access to heart care no matter where you live, work or play. Sanger Clinic

Health Check and Health Choice Programs for NC—website: www.nchealthystart.org/public/childhealth/index.htm

The American Heart Association (AHA) – Their website provides information about CHDs,
types of medical treatment, a glossary of terms and other helpful information. Visit them at: American Heart Associtation

The Congenital Heart Information Network (TCHIN) –TCHIN provides reliable CHD
information, resources Internet links, as well as support for families, adults and health
professionals.
Visit: TCHIN

The Children’s Heart Foundation (CHF) –Founded in 1996, CHF funds the most promising
research to advance the diagnosis, treatment and prevention of congenital heart defects.
Visit them at: www.childrensheartfoundation.org

This site is devoted to providing information to members of the world-wide congenital heart defect (CHD) community.
http://www.congenitalheartdefects.com/

MedlinePlus is the National Institutes of Health's Web site for patients and their families and friends. Produced by the National Library of Medicine, it brings you information about diseases, conditions, and wellness issues in language you can understand. MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free. http://www.nlm.nih.gov/medlineplus/congenitalheartdefects.html

KidsHealth is the most-visited site on the Web for information about health, behavior, and development from before birth through the teen years. http://kidshealth.org/parent/medical/heart/congenital_heart_defects.html

A Slide show: Common types of congenital heart defects http://www.mayoclinic.com/health/congenital-heart-defects/CC00026

A book:
The parent's guide to children's congenital heart defects

Family Voices- information for brochures, books, websites, diagnoses, legislation, state parent groups, information in languages other than English, and training conferences.
www.familyvoices.org, or 1-888-835-5669

The Adult Congenital Heart Association (ACHA) is a nonprofit organization which seeks to improve the quality of life and extend the lives of congenital heart defect survivors.
Adult CHD

Ask your employer about Family Medical Leave (FMLA) http://www.dol.gov/whd/fmla/index.htm

The United Healthcare Children's Foundation has announced that new grants are available to help children who need critical health care treatment, services, or equipment not covered or not fully covered by their parents' health benefit plans.
United Children's Health Fund

Insure Kids Now – Every state in the nation has a health insurance program for infants,
children and teens. The insurance is available to children in working families, including
families that include individuals with a variety of immigration status. To learn more,
make a free call to 1-877-KIDS-NOW. Or for more information
visit their website:
www.insurekidsnow.gov

Social Security Administration – The SSA site provides parents, children, teens and teachers with important information about social security.
Visit them at: www.ssa.gov/kids/index.htm

Community Alternatives Program for Children (CAP-C)-- Providing access to high
quality, medically necessary health care for eligible North Carolina residents through cost effective purchasing of health care services and products. www.dhhs.state.nc.us/dma/commaltprog.htm

Catastrophic Injury Fund--NTAF helps patients and their families organize, launch
and sustain grassroots fundraising campaigns, providing fiscal accountability for the
funds raised and weekly disbursements for life-saving and life-sustaining medical care.
www.transplantfund.org/

Easter Seals--Easter Seals UCP North Carolina creates opportunities, promotes individual
choice and changes the lives of children and adults with disabilities by maximizing
their individual potential for living, learning and working in their communities.
www.nc.eastersealsucp.com

Family Support Network of North Carolina promotes and provides support for families with children who have special needs.
www.fsnnc.org/

The HealthWell Foundation®-- is a 501(c)(3) non-profit, charitable organization that
helps individuals afford prescription medications they are taking for specific illnesses.
www.healthwellfoundation.org

The Partnership for Prescription Assistance-- brings together America’s pharmaceutical
companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them.
www.pparx.org

Donate Life—this is the official U.S. Government website for organ and tissue donation and transplantation.
Visit their website at: www.organdonor.gov

North Carolina Coalition on Donation –their mission is to ensure that every person in North Carolina understands the critical need for organ and tissue donation and is able to make an informed decision about donation.
Visit their website at: www.donatelifenc.org

LifeShare of the Carolinas – is a not-for-profit organ procurement organization designated by the federal government to serve 40 hospitals in a 22 county area of southwestern North Carolina. www.lifesharecarolinas.org

Warm Bell Wetsuits – Warm Belly Wetsuits are comfortable adjustable Neoprene
wetsuits that are specially designed in 5 sizes for ages 6 months to 12 years old. Since
they are adjustable, each size can be worn for years as the child grows. They use quality
2 mm nylon covered Neoprene that provides excellent insulation and is very comfortable. Your kids will stay warmer in the water longer. Perfect for heart kids!
Visit their site at: Warm Belly Wetsuits

Medical Alert Bracelets – MedicAlert provides comprehensive Kid Smart services
that can safeguard and identify your child in an emergency. With a single phone call,
emergency response personnel can access medical history and records, protecting your child against potentially adverse treatments or medication conflicts.
For more information visit: Medical Alert Bracelets

Make a Wish Foundation – This amazing foundation helps grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.
For more information please visit: Make a Wish Foundation

North Carolina’s Public Schools – Exceptional Children -- The mission of the Exceptional
Children Division is to assure that students with disabilities and those who are academically or intellectually gifted develop mentally, physically, emotionally, and vocationally through the provision of an appropriate individualized education in the least restrictive environment.
Call your local school to inquire about the Exceptional Children department or visit: www.ncpublicschools.org/ec/

Exceptional Children’s Assistance Center ECAC is North Carolina’s Parent Center and is
committed to improving the lives and education of ALL children.
www.ecac-parentcenter.org/index.htm

The ARC Chapter of NC --The Arc of North Carolina is committed to securing for all people with mental retardation and other developmental disabilities the opportunity to choose and realize their goals of where and how they learn, live, work, and play.
www.arcnc.org/

Angel Flight- A non-profit organization of pilots and other volunteers dedicated to serving the community by arranging free private air transportation for medical patients who cannot afford to utilize normal, commercial transportation. Angel Flight also provides services to blood, organ and tissue banks.
For more information call(800) 296-1217.

Mercy Medical Airlift- Mercy Medical Airlift (MMA) is a non-profit organization based out of Virginia dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants.
Phone: 1-888-675-1405

Ronald McDonald House coming soon to Charlotte!

While in the Hospital:
• Be your child’s advocate! Don’t be afraid to ask why things are being
done and what the medications are for.
• Ask about a parking pass and meal coupons.
• Bring your camera.
• Journal and write down questions to help remember daily events.
• Bring toiletries and laundry soap to wash your clothes.
• Pack your own meals to keep in your child’s room to help cut down
on meal costs.
• Take your child’s favorite toys, blankets, books, movies.
• Bring sticker books or coloring books.
• Pack your child’s favorite bandages (Dora, Spiderman, etc.).

Angiogram: An x-ray of blood vessels which can be seen because the patient receives an injection of dye to outline the vessels on the x-ray.

Aorta: The largest artery in the body, the aorta arises from the left ventricle of the heart, goes up (ascends) a little ways, bends over (arches), then goes down (descends) through the chest and through the abdomen to where ends by dividing into two arteries called the common iliac arteries that go to the legs.

Aortic: Pertaining to the aorta, the largest artery in the body.

Artery: A vessel that carries blood high in oxygen content away from the heart to the farthest reaches of the body. Since blood in arteries is usually full of oxygen, the hemoglobin in the red blood cells is oxygenated. The resultant form of hemoglobin (oxyhemoglobin) is what makes arterial blood look bright red.

Atresia: Absence of a normal opening or failure of a structure to be tubular.
See the entire definition of Atresia

Atria: The plural of atrium. The atria are the two smaller chambers of the heart. Each atrium consists of an open space with recessed walls.

Atrial: Pertaining to the atria, the upper chambers of the heart, as in atrial fibrillation and atrial septal defect.

Atrium: One of the two smaller chambers of the heart. Each atrium consists of an open space with recessed walls. The plural of atrium is atria.

Cardiovascular: The circulatory system comprising the heart and blood vessels which carries nutrients and oxygen to the tissues of the body and removes carbon dioxide and other wastes from them.

Catheter: A thin, flexible tube. For example, a catheter placed in a vein provides a pathway for giving drugs, nutrients, fluids, or blood products. Samples of blood can also be withdrawn through the catheter.

Coronary arteries: The vessels that supply the heart muscle with blood rich in oxygen. They are called the coronary arteries because they encircle the heart in the manner of a crown. The word "coronary" comes from the Latin "corona" and Greek "koron" meaning crown. Like other arteries, the coronaries may be subject to arteriosclerosis (hardening of the arteries). There are a number of coronary arteries. Those most often bypassed today include the right coronary artery, the posterior descending coronary artery, the left main coronary artery, the left anterior descending coronary artery and the left circumflex coronary artery. Plaques obstructing the coronary arteries may also be treated by balloon angioplasty, stents, and other techniques.

Cyanosis: A bluish color of the skin and the mucous membranes due to insufficient oxygen in the blood. For example, the lips may show cyanosis. Cyanosis can be evident at birth, as in a "blue baby" who has a heart malformation that permits blood that is not fully oxygenated to enter the arterial circulation. Cyanosis can also appear at any time later in life.

Electrocardiogram: A recording of the electrical activity of the heart. An electrocardiogram is a simple, non-invasive procedure. Electrodes are placed on the skin of the chest and connected in a specific order to a machine that, when turned on, measures electrical activity all overaround the heart. Output is usually in the form of a long scroll of paper displaying a printed graph of activity. Newer models output the data directly to a computer and screen, although a print-out may still be made.

Heart valves: There are four heart valves. All are one-way valves. Blood entering the heart first passes through the tricuspid valve and then the pulmonary valve. After returning from the lungs, the blood passes through the mitral (bicuspid) valve and exits via the aortic valve.

Hypertension: High blood pressure, defined as a repeatedly elevated blood pressure exceeding 140 over 90 mmHg -- a systolic pressure above 140 with a diastolic pressure above 90.

Hypertrophy: Enlargement or overgrowth of an organ or part of the body due to the increased size of the constituent cells. Hypertrophy occurs in the biceps and heart because of increased work. Cardiac hypertrophy is recognizable microscopically by the increased size of the cells. The term hypertrophy is applied to the enlargement of the uterus during pregnancy. The term benign prostatic hypertrophy is a misnomer because the increased size of the prostate is due to hyperplasia, an increase in the number of cells.

Left atrium: The upper right chamber of the heart. The left atrium receives oxygenated blood from the lungs and pumps it down into the left ventricle which delivers it to the body.

Left ventricle: The left lower chamber of the heart that receives blood from the left atrium and pumps it out under high pressure through the aorta to the body.

Pulmonary artery: One of the two vessels which are formed as terminal branches of the pulmonary trunk and convey unaerated blood to the lungs. The two pulmonary arteries differ in length and anatomy.

Pulmonary valve: One of the four valves in the heart, the pulmonary valve stands at the opening from the right ventricle in the pulmonary artery trunk. It lets blood head in the right direction (toward the lungs) and keeps it from sloshing back from the pulmonary artery into the heart.

Regurgitation: A backward flowing. For example, of food. Or the sloshing of blood back into the heart (or between chambers of the heart) when a heart valve is incompetent and does not close effectively.

Right atrium: The right upper chamber of the heart. The right atrium receives deoxygenated blood from the body through the vena cava and pumps it into the right ventricle which then sends it to the lungs to be oxygenated.

Right ventricle: The lower right chamber of the heart that receives deoxygenated blood from the right atrium and pumps it under low pressure into the lungs via the pulmonary artery.

Septum: A word borrowed from the Latin "saeptum" meaning a "dividing wall or enclosure."

Stenosis: A narrowing, as in:

• aortic stenosis (narrowing of the aortic valve of the heart),
• pulmonary stenosis (narrowing of the pulmonary valve of the heart),
• pyloric stenosis (narrowing of the outlet of the stomach), and
• spinal stenosis (narrowing of the vertebral canal).
  

Systole: The time period when the heart is contracting. The period specifically during which the left ventricle of the heart contracts.

TEE: Transesophageal echocardiography. A diagnostic test which employs ultrasound waves to make images of the heart chambers, valves and surrounding structures and which is done through the esophagus.

Tetralogy of Fallot: A combination of four heart defects that are present together at birth, accounting for about 10% of all congenital heart disease.

Tricuspid: Having three flaps or cusps. The valve that is called the tricuspid valve is situated between the right atrium and right ventricle and permits blood to flow only from the atrium into the ventricle. The aortic valve in the heart also has three cusps.

Vena cava: The superior vena cava is the large vein which returns blood to the heart from the head, neck and both upper limbs. The inferior vena cava returns blood to the heart from the lower part of the body.

Ventricle: A chamber of an organ. For example, the four connected cavities (hollow spaces) in the central portion of the brain and the lower two chambers of the heart are called ventricles.

Vessel: A tube in the body that carries fluids: blood vessels or lymph vessels.

VSD: A Ventricular Septal Defect, a hole in the septum (the wall) between the lower chambers of the heart (the ventricles).