Is HLHS considered 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.

How long can a baby live with HLHS?

Most infants die within the first two weeks of life, with an average age at death of 4.5 days (31,33,34). Some patients with HLHS, however, can survive beyond sixty days, without any surgical intervention through the development of pulmonary hypertension (8,33).

How much does a Norwood procedure cost?

The length of stay (LOS) for a patient after a Norwood procedure is around 28 days with a cost close to $110,000 (US), and hospital charges around $280,000, making the daily hospital cost for these patients around $7,000 to $10,000.

Can you get disability for congenital heart defect?

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 success rate for the Norwood procedure?

Of the 240 fetuses diagnosed with HLHS, 185 newborns underwent the first stage of surgery, called the Norwood procedure, resulting in 155 survivors and 30 deaths. Within those overall figures, 93 percent of standard-risk cases survived the first operation, compared to 57 percent of high-risk cases.

Does CHD qualify for SSI?

A CHD will not automatically qualify with a diagnosis alone, but many children with heart problems are eligible for assistance. Technical Eligibility for Disability Benefits: All children under age 18 will qualify for Supplemental Security Income, or SSI.

Can you get disability for a birth defect?

Yes, many birth defects are listed on the SSA’s list of impairments, which includes: Low birth weight and failure to thrive. Respiratory disorders. Disorders of the cardiovascular, musculoskeletal, digestive, blood, and skin.

What is HLH?

What is HLH? You could save a life! If you, or someone you love, has been diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), and you are trying to make sense of it all, then you have come to the right place. We understand the anguish and worry that comes with the diagnosis, and are here to help you navigate through the world of HLH.

Why Cincinnati Children’s for HLH?

While HLH is rare, Cincinnati Children’s treats a large population of children with HLH. The clinical and research pioneers at Cincinnati Children’s are committed to changing the outcome for children with HLH.

What is the HLH center of Excellence?

Without access to effective treatment, primarily bone marrow transplantation (BMT), most patients with HLH die. As the most experienced facility in the nation in treating HLH, Cincinnati Children’s has assembled a team of researchers, physicians, families who have faced an HLH diagnosis and philanthropists to create the HLH Center of Excellence.