What is the life expectancy of a child with HLHS?

Kaplan-Meier survival estimates for cases of HLHS born between 1998 and 2012 are shown in Table 2, with 84.4% of cases surviving the first week of life, 76.2% the first month, 63.5% to age 1 year, 58.6% to age 5 years, 54.6% to age 10 years, and 32.6% to age 15 years.

What is the most severe congenital heart defect?

The most serious congenital heart defects are called critical congenital heart defects (also called critical CHDs). Babies with critical CHDs need surgery or other treatment within the first year of life. Without treatment, critical CHDs can be deadly.

Is HLHS a disability?

If your child has been born with Hypoplastic Left Heart Syndrome it may help to know that he or she will automatically qualify for Social Security Disability benefits because the SSA has recently determined the condition meets the criteria for Compassionate Allowance status.

What are the chances of having another baby with HLHS?

For example, in classical Hypoplastic Left Heart Syndrome the risk of having another child with Hypoplastic Left Heart Syndrome has been reported to be as high as 8% (8 in 100) although this has not been my personal experience and I have found the recurrence much less.

Is a congenital heart defect considered a disability?

If your child has a congenital heart defect, he or she may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly financial aid for people of all ages who have serious conditions or illnesses.

What is the prognosis for children with HLHS?

Children who have had surgical reconstruction for HLHS require life-long care by a cardiologist experienced in congenital heart disease. Sometimes they experience serious health problems. Many remain on medication, and additional surgeries may be required. Patients with Fontan circulation are referred to as single ventricle patients.

Why is HLHS considered a critical congenital heart defect?

Because a baby with this defect needs surgery or other procedures soon after birth, HLHS is considered a critical congenital heart defect (CCHD). Hypoplastic left heart syndrome affects a number of structures on the left side of the heart that do not fully develop, for example: The left ventricle is underdeveloped and too small.

What is hypoplastic left heart syndrome (HLHS)?

Hypoplastic left heart syndrome (HLHS) is a severe congenital heart defect in which the left side of the heart is underdeveloped.

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