Disability Benefits For Children With Congenital Heart Defects

Congenital heart defects (CHD) are Americas #1 birth defect, affecting nearly 1 out of every 100 babies. CHD are the leading cause of all infant deaths in the United States.

Defects can range from a hole in the heart and obstructed blood flow to conditions such as HLHS where multiple parts of the left side of the heart do not develop completely.  Surgeries can range from catheterizations to major open heart bypass surgeries and transplants.  Symptoms may include bluish skin, shortness of breath and fatigue.

SSI disability benefits are available to children with Congenital Heart Defects.  There are several CHD listed on SSA’s compassionate allowance list.  Children may also meet several listings to qualify for benefits.  The listings are:

104.6 – Congenital Heart Disease

To qualify under listing 104.6, the child must have 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.

OR

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.

OR

Secondary pulmonary vascular obstructive disease, with pulmonary arterial systolic pressure 70% or more of the systemic arterial systolic pressure.

OR

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.

Children may also meet listings 104.02 – Chronic Heart Failure, and 104.05 – Recurrent arrhythmias which are not listed in this article.

If your child’s condition is not on the list of compassionate allowances or does not meet a listing, they may still be approved for benefits if they functionally equal a listing.  To functionally equal a listing, the child must have an extreme limitation in one area or two marked limitations in two areas of the six domains of functioning, which include acquiring and using information, attending and completing tasks, interacting and relating with others,  moving about and manipulating objects, caring for oneself and health and physical well-being.