How Has the Prevention of Developmental Disabilities at Birth Been Ignored in Data Collection Efforts for the Last 30 Years?


If we could redo history, had not redefined Developmental Disabilities in legislation through mental health acts or if we had not removed the 1989 State Birth and Developmental Outcome Monitoring Programs in 1999, would we have collected more data and research in the last 30 years to understand the rising incidence of Developmental Disabilities.  Would we have the data to understand how to prevent disabilities such as Autism and Cerebral Palsy in children?

We collect data on birth defects, but we no longer mandate data from the time of birth for those with other types of birth anomalies that may be important in identifying the cause of Developmental Disability.  If they enter public education at some point, there will be monitoring of a development delay.

There are various agencies collecting data including the CDC, but this data is not mandated and the data collection efforts have been largely through parent surveys rather than data collected from the medical and scientific records at birth.

The U.S Standard Certificate of Live Birth and medical records do take some data at the time of birth on birth anomalies and injury that may develop into life-long disability, although not as specific as it could now be.

The U.S. Standard Certificate of Live Birth is a multi-purpose document: a record of the vital event of birth, legal proof for the individual that birth occurred and “provides medical information to serve the needs of public health programs and health research.” (1)

After a baby is born alive, data is collected by doctors, nurses or other attendants at birth and hospital staff or other attendants record it on the U.S. Standard Certificate of Live Birth. (2)

This certificate is then sent to the individual state Office of Vital Statistics. (The state then issues a separate and brief form in a Birth Certificate to the individual.) Each state department of health, the U.S. Department of Health and Human Services, the CDC and the National Center for Health Statistics use the information provided on the U.S. Standard Certificate of Live Birth to collect and analyze data at birth for health statistics and research. (2)

As a data collection tool, the birth certificate is posed to give a great deal of information without duplicating other data collection programs, as it is also necessary for the function of determining citizenship.

The following is an example of data collection and how data collection could be improved.

A history of recording birth injury on the U.S. Standard Certificate of Live Birth is as follows below.

• In the 1968 revision of the U.S. Standard Certificate of Live Birth the following items were added “congenital malformations or anomalies of child” and “birth injuries to child” (3)

• In the 1978 revision of the U.S. Standard Certificate of Live Birth, “Birth injuries to child” entry was removed from the items “because it was under reported.” (4)

• In 1989 revision of the Standard, “Congenital malformations or anomalies of child is replaced with just anomalies of child with check boxes, and more items are added. For each of these topics, however,  there are multiple choice of subtopics, some grouped in multiples with each check box, no way to show specific data.

• On the 2003 Revision of the U.S. Standard Certificate of Live Birth, the birth certificate in use today, under “abnormal conditions of the newborn,” this revision limited reporting of birth injuries to: “significant birth injury (skeletal fracture), peripheral nerve injury, and/or soft tissue/solid organ hemorrhage which requires intervention.”

It is fairly clear that “birth injuries to the child” in 1968 was in time replaced in 1989 and 2003 with “abnormal conditions of the newborn.” This crafting of language is of course to lessen responsibility on the doctor and we understand the consequences of such language, however, it is also clear that birth injury appears to not be getting much attention for improving the outcomes of obstetric practices for the unborn child.

1. Although each revision of the birth certificate emphasizes an expression of getting a clearer picture of the newborn, there is still a limitation of choices. These topics are main categories that include more check boxes and a box is included for “none of the above.” There is no write in available for “other” on any of these items.

2. A “significant birth injury” is under the heading an “abnormal condition of the newborn.” Medical science wants to blame the newborn for their injuries?

As we do not know the causes of Developmental Disabilities, we should be taking the data of birth injury, however insignificant, especially to the brain.

It is apparent injuries of the newborn still occur, as we do record birth injury on the death certificate. Reasons for reporting birth injury in the case of death would seem even more important for the child in life, yet there is only reporting of “significant” birth injury on the live certificate. This seems very subjective, when any injury to the brain may eventually turn out to be significant. Reporting of all birth injuries should be mandatory as some of the consequences of birth injuries are not diagnosed immediately after birth; perhaps not for several years.

In the 2006 AHRQ Statistical Brief, the number of potentially avoidable injuries to newborns (broken collarbone, an infection, or a head injury) in the U.S. were reported at 1.6 per 1,000 live births, (there were 4.3 million live births that year so 6880 births.) The brief was interested in advocating for the highest quality care for all patients in the U.S. and brought injuries forward for the purpose of preventing them. (6) It does not necessarily follow that these injuries will result in development disability, but there is no way to know unless we take the data.(6)
Research cannot experiment on mothers and babies; we must take the data at birth. If we take the data, we can decide, what is important or not. If data is not collected any statements regarding cause of disability is opinion or guess and not research based science.

The prevalence spikes for Autism have happened quickly and continue to grow each year. We must give our utmost attention now to research for the causes of Developmental Disability!

It is time for legislators, researchers, and members of the medical community to take leadership, have the discipline and due diligence and look at all that one is doing and evaluate to see if one can prevent what has happened. When something goes wrong, we should be looking at what one might have done to cause the train wreck, but data collection is focused at looking at all the other risk factors, yet not taking enough statistics of the actual birth conditions.

We need to begin today to more adequately research the causes of these disabilities and we need to more effectively collect the data from birth for that research.

Could road blocks to collecting data at birth and recent trends in birthing be placing newborns at risk from finding that which could be identified and may be potentially preventable?

If you have information about the prevention of disability, please comment or send us an e-mail.

New Horizons Un-Limited invites you to visit our Report on the Prevention of Disabilities which focuses on the prevention of Developmental Disabilities.


(1) Wisconsin Legislature, “Chapter DHS 142 Access to Vital Records.” (January 2009).
(2) “Who knows the difference between a Birth Certificate and Certificate of Live Birth?” <; (21 October 2014) (Place question in to get answer).
(3) U.S. Department of Health and Human Services/ Centers for Disease Control/ National Center for Health Statistics, “The 1989 Revision of the U.S. Standard Certificates and Reports” Series 4, No. 28 (June 1991).
(4) National Center for Health Statistics, M.L. Dundon, G.A. Gay, and J.L. George: “The 1978 revision of the U.S. standard certificates.” Vital and Health Statistics. Series 4-No. 23. DHHS Pub. No. (PHS) 83-1460. Public Health Service. (Washington) U.S. Government Printing Office, (February 1983). P. 6.
(5) “Disability in America: Toward a National Agenda for Prevention”, National Academies Press, < > (2 December 2014).
(6) C. Allison Russo, M.P.H. and Roxanne M. Andres, Ph.D., “Statistical Brief #74 Potentially Avoidable Injuries to Mothers and Newborns During Childbirth, 2006,” <> (Rockville, MD Feb. 2014).

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