Do We Collect the Important Data at Birth on the U.S. Standard Certificate of Live Birth to Prevent Lifelong Disability?

Adult hand holding infant's hand

Although medical science does acknowledge a complex mix of risk factors prevalent in the research of Developmental Disabilities, the CDC cannot identify all the causes. The fact is there are many ways that the developing brain may be subject to: stress, infection, endures trauma or injury before, during, and after birth to cause the abnormal formation or injury of the brain and we are not collecting reliable data on these.

There is a great need to broaden the scope of data collected on the U.S. Standard Certificate of Live Birth in accordance with medical research to find causes and identify ways to prevent Developmental Disabilities.

Do we collect the important data at birth necessary to address the cause and effect and therefore the prevention of lifelong disability?

Is data about wealth, insurance, education, enough to explain the environment of the newborn when we are asking about the health environment of the newborn?

Do we know what medications were used for mother and baby before, during and after birth? Do we know if the mother took over the counter medication or supplements? Has research concentrated on the long-term effects on the child of drugs given to the mother during labor and delivery?

Can we quantify and understand the impact of birth complications and birth injuries to be able to reduce adverse events and achieve higher quality of care?

The following are risk factors that are recognized in both Autism and Cerebral Palsy (1)

• Preterm and very preterm delivery – 11.7% or 463,163 children born in 2011 (2) “It is well- established that early birth can affect the developing brain.” (3) “As the cause of labor still remains elusive, the exact cause of preterm birth is also unsolved. In fact, the cause of 50% of preterm births is never determined.” (4)
• Low and very low birth weight 8.1% and 1.4% of children born in 2011 in the U.S. respectively. (5)
• Multiple birth
• Cesarean delivery – increased 60% from 1996-2009 reaching 32.9%, 32.7% in 2013. (6)
• Breech presentation
• In vitro fertilization or other Assisted Reproductive Technologies
• Brain injury
• Environmental factors

Much current research on Autism devotes funding and work to congenital causes and gene changes. These causes to brain abnormal formation or brain injury may not be preventable, but a recent study by Stanford University School of Medicine of twins showed that genes only account for 38% risk and 62% risk are explained by environmental factors. (7) With so many environmental variables, we need to broaden the scope of data to more adequately collect data at birth, to assist in identifying these factors.

These are a list of some of the most common Teratogens identified to have an adverse effect on the developing fetus and child: Alcohol, Aspirin, Cortisone, Caffeine, Tetracycline, Tobacco, Tranquilizers, and chemicals – Methyl Mercury, pesticides, and lead. (8)

These obviously have been researched, yet do we know the long term effects to the fetus. Recent research has looked at Tylenol as contributing to ADHD. In another study an environmental stressor, severe cold weather, was determined to be a cause for more incidence of Autism.

Parents are told to avoid over the counter medications, alcohol, and smoking and yet, when the mother goes to the hospital to have her baby, she could be granted the most powerful of labor inducing drugs and pain relieving epidurals, which may be causing more havoc on the developing fetus. (9)(10)  How often are these administered for convenience and not medical necessity? This data should be collected on the standard certificate and children monitored to determine the long term effects of these obstetric medications used during childbirth.

For many Developmental Disabilities, causes are unknown. We find ourselves guessing at the possibility of causes from new trends in child birth. Advances in medicine need more research to determine their effect on the developing brains of our children.

These possible causes such as assistive reproductive technology, induced labor and cesarean delivery scheduled for convenience or scheduling delivery prematurely, obstetric practices or procedures, medications used during pregnancy and childbirth, environmental factors, interventions used in childbirth, and changes in care for mother and child before, during and after birth may be determined to be identified as preventable.

Birth certificates, hospital records or medical records should state the circumstances at birth. If we kept more adequate records on this information prior and during the gestation through birth process and after birth, we may be able to better determine cause and effect without guessing. With the rapid changes in medicine and approaches to birth, we need to collect the data at birth. If data is not collected, then statements regarding cause of disability are based on opinions or guesses and not research based in science.

What other road blocks in collecting data for research do we face to find the causes of Developmental Disabilities so we might prevent disability?

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

Please see how we should broaden the data collected at birth on the certificate of live birth by visiting our New Horizons Un-Limited Report on the Prevention of Disabilities which focuses on the prevention of Developmental Disabilities.


(1) Why Are Autism Spectrum Disorders Increasing? Centers for Disease Control and Prevention (CDC) <> (10/21/2014) (Link no longer available).

(2) CDC, National Vital Statistics Reports, Vol. 62, No. 2, July 22, 2013 pp. 9-10.

(3) James Gallagher, “Premature birth linked to worse mental health,” BBC News: Health, 01 June 2012, (03 June 2012).

(4) Preterm birth, Wikipedia, <> (23 January 2014).

(5) CDC, National Vital Statistics Reports, Vol. 62, No. 2, July 22, 2013 pp. 9-10.

(6) U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics, National Vital Statistics System, “Births: Preliminary Data for 2013,” (National Vital Statistics Reports: Volume 63, Number 2, May 29, 2014).

(7) Teresa Conrick, “The Scientific and Basic Moral Reasons We Need an Autism Cure,” Age of Autism, February 28, 2013 <> (07 January 2015).

(8) Jane Case-Smith, EdD. OTR/L. Jane Clifford O’Brien, Phd., FAOTA Mosby Elsevier OTR/L, Occupational Therapy for children, (6th Edition, Maryland Heights, Missouri, 2010).

(9) Beverley Lawrence Beech, “Drugs in Labour: What Effects Do They Have 20 Years Hence?” 1999 Midwifery Today, Inc., All Rights Reserved. <> (01 January 30) (Brackbrill, 1979).

(10) CDC, NCHS Data Brief, Recent Declines in Induction of Labor by Gestational Age – Number 155, June 2014, <> (1 April 2015).

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