Birth Defects Data
The EPHT Program is tracking the total number of cases for the following 12 specific birth defects:
- Spina bifida (without anencephaly)
- Hypoplastic left heart syndrome
- Tetralogy of Fallot
- Transposition of the great arteries (vessels)
- Cleft lip with or without cleft palate
- Cleft palate without cleft lip
- Upper limb deficiencies
- Lower limb deficiencies
- Trisomy 21
- Among mothers 18-<35 years of age at delivery
- Among mothers 35-59 years of age at delivery
Many states collect birth defects data, however not all of their surveillance systems collect data in the same way; so you should not compare information from one state to another.
Birth defects surveillance systems can differ in a number of ways:
- Some states have active surveillance, which means a public health or health care professional will seek out birth defects information. For example, the expert will have to go to the hospital to review medical records, hospital charts, and delivery or nursery logs to find records of babies with birth defects.
- Some states have passive surveillance, which means the system relies on doctors or hospitals to send reports to the public health department.
- Some states have a combination of passive and active surveillance, known as passive surveillance with active follow-up.
In both active and passive methods, scientists can also use hospital discharge data or birth certificates to find the information they need.
- Some states are able to include information about birth defects that are diagnosed before the baby is born, even if the pregnancy ended unexpectedly or by choice.
- Some babies are born with one birth defect only (isolated). Other babies may be born with more than one defect (multiple). Babies that have a birth defect caused by a genetic problem are considered to have a syndrome. Knowing if a baby has only one birth defect or more than one is important because the causes might be different.
The comparisons that can be made inside a state include:
- frequency of birth defects by area such as county,
- frequency of birth defects over time, and
- frequency of birth defects by race or ethnicity and changes in these measures over time.
For more information on how New Hampshire collects data go to the NH Birth Conditions Program.