A congenital heart defect is a problem with the structure of the heart that a child is born with. Congenital heart defects can be harmless or they can cause long-term problems that require extensive treatment.
The most common congenital defects fall into one of these categories, but the defect can involve multiple problems:
- a hole in the heart
- obstructed blood flow
- abnormal blood vessels, and
- heart valve abnormalities.
Symptoms of a congenital heart defect vary depending on the type and severity of the defect. Symptoms of a cyanotic heart defect can include pale or bluish skin, shortness of breath, fainting, and fatigue. Symptoms of an acyanotic heart defect can include rapid breathing and abnormal heart rhythmic or rate, and getting tired easily during exercise.
Congenital heart defects may be treated with medication, open-heart surgery, heart catheterization, and in more serious cases, a heart-transplant. The prognosis for a child with a congenital heart defect depends on the type of defect.
What Disability Benefits Are Available to Children?
Supplemental Security Income (SSI) is available to children who are disabled according to the Social Security Administration’s (SSA) definition. However, whether or not a child can get SSI also depends on the parents’ income and assets. This means that if you make too much money or if you have too many financial resources (like stocks, pensions, or property other than your house), your child may not be able to get SSI even if the SSA decides she is disabled. If you want to learn more, you can read our article on SSI benefits for children. (Or read our article on congenital hearts defects in adults.)
Can My Child Get Disability for a Congenital Heart Defect?
If your child has a physical or mental impairment that results in severe functional limitations and the condition has lasted, or is expected to last, at least a year or result in the child’s death, your child may be eligible for disability benefits through SSI. There are several ways for Social Security to find that your child has severe functional limitations (is disabled).
Heart Problem Listings
Some medical conditions are so serious that Social Security usually approves for benefits automatically. These conditions are written up in “ impairment listings.” Social Security has several impairment listings for heart problems. Each listing has a specific set of criteria, all of which must be met in order to get automatically approved for benefits under that listing.
104.06 Congenital heart disease
To be approved automatically for benefits under this listing, your child must be diagnosed with congenital heart disease and experience one of the following sets of symptoms. Remember that all of the criteria for the condition must be met.
Cyanotic heart disease with chronically low blood oxygen, demonstrated by one of the following:
- a hematocrit of 55% or greater (on two evaluations within a year, three months or more apart)
- arterial oxygen saturation of less than 90% in room air
- resting oxygen pressure of 60 Torr or less
- hypercyanotic spells (increased cyanosis)
- syncope (fainting)
- characteristic squatting, or
- inability to exercise because of low blood oxygen on exertion.
Symptomatic acyanotic heart disease, with ventricular dysfunction that interferes very seriously with your child’s ability to initiate, sustain, or complete activities on his or her own.
Secondary pulmonary vascular obstructive disease, with pulmonary arterial systolic pressure 70% or more of the systemic arterial systolic pressure.
Infant needing surgery for congenital heart defect. If your child is under 12 months old and has a life-threatening congenital heart defect, he or she will be considered disabled until the age of one if:
- your child has had surgery for the impairment or is expected to need surgery before age one, and
- the impairment is expected to be disabling (because of the effects of the surgery, the recovery time, or both) age one. (Once your child turns one, the SSA will reevaluate him or her to see if she is still disabled.)
104.02 Chronic heart failure
If your child experiences chronic heart failure because of her congenital heart defect, he or she will be approved if she has an enlarged heart or ventricle dysfunction (despite treatment) with one of the following:
- chronic abnormally fast heart rate at rest (according to Social Security's tachycardia chart)
- chronic abnormally fast breathing at rest (according to Social Security's tachypnea chart)
- markedly decreased ability to exercise without symptoms, or
- a growth impairment meeting certain percentiles on CDC growth charts.
Visit Social Security's childhood heart failure listing to see the exact parameters for tachycardia, tachypnea, and growth impairment.
104.05 Recurrent arrhythmias
If your child suffers from recurring abnormal heart rhythms due to a congenital heart defect, he or she can be approved for benefits under this listing if all of the following criteria are met:
- the arrhythmia is not caused by a reversible condition (such as electrolyte imbalance or antiarrhythmic drug toxicity)
- the arrhythmia causes uncontrolled and recurrent episodes of cardiac syncope (fainting) or near fainting (despite being on medication), and
- the syncope is documented by resting or ambulatory electrocardiography (or other appropriate medical testing) at the time of the syncope or near syncope.
These listing requirements are complicated. It may be a good idea to speak with your child’s cardiologist to see if her condition meets the criteria. Your doctor can review the full requirements for each listing on the SSA’s website.
What if My Child’s Heart Condition Doesn’t Meet the Listing Requirements?
If your child’s heart defect doesn’t meet the requirements of one of the above listings, he or she may still be approved for benefits if Social Security decides that the symptoms caused by the heart defect are so severe that they "functionally equal" the listings. Specifically, your child's symptoms must result in a “marked” limitation in two areas of functioning or an “extreme” limitation in one area. Areas of functioning include moving about and manipulating objects, learning and using information, and caring for his or her personal needs.
Social Security will use information from your child's medical records, school records, therapist reports, and other documents to decide whether your child has marked or extreme limitations. For more information, see our article on functionallyequaling the listings.
Getting Help From an Attorney
The disability requirements for a child with a congenital heart defect are complicated and the disability process long and stressful. If your child is denied benefits on the first try, it may be helpful to speak with a disability attorney who is experienced at handling childhood disability claims. To find an attorney in your area, fill out our consultation form.