What are structural heart defects?
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Cyanotic congenital heart defects
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Cyanotic defects are very serious and cause the baby to have very low oxygen levels shortly after birth.
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Examples of cyanotic heart defects are transposition of the great vessels, tetralogy of Fallot, or hypoplastic left heart.
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These babies usually have heart surgery early in life and often have multiple heart surgeries to correct the defects.
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There are other congenital heart defects of different types. Some make the heart work too hard because it has to pump blood against a blockage, and some increase the amount of blood the heart has to pump.
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Some congenital heart defects need surgery; some need medications; some need no special treatment.
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Some babies with congenital heart disease might need surgery but may be able to wait awhile to grow first. Examples of these are ventricular septal defect (VSD), atrial septal defect, or patent ductus arteriosis. Valve problems like pulmonic or aortic stenosis can also fall in this category.
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Some babies have subtle heart defects that might not be diagnosed for years. Sometimes they heal on their own; other times they need to be treated. Small, muscular VSDs can sometimes close spontaneously.
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Some conditions, such as coarctation of the aorta (in which the major blood vessel that supplies the body is narrowed), require treatment but can be missed for years because they don’t cause obvious symptoms.
How common are they?
Thirty-five thousand babies are born every year in the United States with these problems, according to the American Heart Association.
What are some characteristics of children with structural heart defects?
If the heart defect is minor or was completely repaired, the baby or child may appear normal or may just have a scar on the chest. If the defect was not fully repaired, the baby or child may have
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Cyanosis, which is a blue color that is most easily seen around the mouth and lips.
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Feeding difficulties, or the baby or child may tire more easily with feedings or exercise. Some babies have difficulty gaining weight.
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Arrhythmias or irregular heartbeat.
Who is the treatment team?
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Pediatric cardiac surgery is often performed in special centers that are equipped to handle babies and young children.
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Pediatric cardiologists are involved in the care along with the primary care provider in the medical home.
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Children who have had cardiac surgery may need developmental therapy to help them gain their strength and catch up with the milestones they missed while they were ill or recovering from surgery.
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Speech therapists and nutritionists may help with feeding issues.
What adaptations may be needed?
Medications
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Many children will not require medication. Those that do will usually have oral medications to
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Strengthen the heart, like digoxin. This can usually be given at home. Digoxin (Lanoxin is one brand name) must be given very carefully and can cause irregular heartbeats if not dosed correctly.
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Reduce the fluid in the body with diuretics like furosemide (Lasix). This also will likely be given at home. Diuretics can alter the body’s balance of salts and this must be monitored closely. Some children may need extra potassium.
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Prevent arrhythmias.
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No over-the-counter medications should be given unless approved by the child’s doctor.
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Influenza vaccine—all children should get the flu vaccine, but it is especially important for children with heart disease.
Dietary considerations
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Some babies with heart defects may need extra calories to help them to grow.
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They may need small, frequent feedings if they tire easily, and they may feed more slowly than other babies or children in the group.
Physical environment
There are usually few medical restrictions on physical activity, but the child may tire more easily and should be allowed to rest.
What should be considered an emergency?
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Heart defects can vary dramatically and the Care Plan should outline the particular symptoms to watch for in that particular child and how to respond. Some conditions that may be mentioned include
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Arrhythmia (irregular heart rate)
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Cyanosis (blue color usually most easily seen around the mouth)
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The Care Plan should outline when to call emergency medical services/911 and when calling parents is sufficient.
What types of training or policies are advised?
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How to check a pulse.
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Pediatric first aid training that includes CPR (management of a blocked airway and rescue breathing) with instructional demonstration and return demonstration by participants on a manikin.
Pediatric First Aid for Caregivers and Teachers is a course designed to teach these skills. -
It is important if you have a child with a serious arrhythmia to have a responsible caregiver who knows CPR, including cardiac resuscitation, on site at all times.
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If the baby needs special formula or is a slow feeder, training on feeding techniques by a nutritionist or feeding therapist may be helpful.
What are some resources?
Congenital Heart Information Network,http://tchin.org, 609/822-1572
Source: Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide.
Products are mentioned for informational purposes only. Inclusion in this publication does not imply endorsement by the American Academy of Pediatrics.
Listing of resources does not imply an endorsement by the American Academy of Pediatrics (AAP). The AAP is not responsible for the content of external resources. Information was current at the time of publication.
The information contained in this publication should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.