The New Jersey Regional Diagnostic Centers use the diagnostic system developed at the University of Washington Fetal Alcohol Syndrome Prevention and Diagnostic Network (FASPDN), and the Centers thank the staff of the FASPDN for their innovation and commitment to refining the diagnostic criteria for FAS. The N.J. diagnostic system describes the severity of the expression of the effects of prenatal exposure to alcohol by examining deficits in growth, facial abnormalities, brain function, and confirmation of prenatal exposure to alcohol. Each of these features is described briefly below along with photographs provided by the University of Washington for demonstration purposes. Because FAS is considered a lifelong birth defect, it needs to be diagnosed by a medical physician. This usually is a developmental pediatrician, or a dysmorphologist. Other professionals who may participate in giving a thorough diagnosis include, but are not limited to, a psychologist, LDTC, speech-language therapist, occupational and/or physical therapist, and a psychiatrist.
The main features of the University of Washington diagnostic system can be reviewed using by visiting http://depts.washington.edu/fasdwa/Diagnosis.htm. Families and professionals (see http://www.cdc.gov/ncbddd/fasd/index.html) are encouraged to review this presentation to learn how the formal diagnoses of FAS and FASD are made.
The diagnosis of FAS can only be made by a medical professional.
The location of the New Jersey Regional Fetal Alcohol Spectrum Disorder Diagnostic Centers (addresses, points of contact for each center, and phone numbers) are provided below: Northern Regional CentersSusan Adubato, Ph.D., Director
adubatsu@umdnj.edu
Marianella Abreau, Contract Person
Northern NJ FAS Diagnostic Center
UMDNJ-NJMS
30 Bergen St.ADMC 1608 Newark, NJ 07107
(973) 972-8930 Barbara Caspi, Ph.D., Coordinator
bcaspi@sbhcs.com
CHATT-Child Evaluation Center
Newark Beth Israel Hospital Affiliate, St.
Barnabas Health Care System
201 Lyons Avenue
Newark, NJ 07112 (973) 926-4544 Central Regional CentersDenise Aloisio, MD
Child Eval Center at
Jersey Shore Medical Center
1944 Route 33, Suite 101-A
Neptune, NJ 07753
(732) 776-4178 Uday Mehta, MD, MPH, Director
Ambulatory Care Center
Children's Specialized Hospital
150 New Providence Road
Mountainside, NJ 07092
(908) 301-5511 Southern Regional Center6106 Black Horse Pike
Egg Harbor Township, NJ 08234
(888) 244-537 Children’s Hospital of Philadelphia Specialty Care Center in Atlantic County
Kristin Baumiller MSW, LSW
Coordinator, CEC/FASD Clinic
Baumillerk@email.chop.edu
4009 Black Horse Pike
Mays Landing, NJ 08330
(609) 677-7895 |
Why Should the People of New Jersey Be Concerned?
Fetal Alcohol Syndrome (FAS) represents a cluster of serious birth defects caused by the consumption of alcohol by women who are pregnant. FAS is typically diagnosed during late infancy or early childhood, and even with intensive intervention efforts, problems may persist throughout a person's life. In addition to the immeasurable toll on the children and their families, the U.S. Department of Health and Human Services recently estimated that the lifetime health care costs of each FAS child exceeds $1,400,000.
Can Fetal Alcohol Syndrome Be Prevented?
Fetal Alcohol Syndrome (FAS) is 100% preventable if a woman does not use alcohol while she is pregnant. Indeed, FAS is the most commonly known preventable birth defect that results in mental retardation.
How are FAS and FASD Related? FAS is a cluster of permanent, non-curable birth defects. It is characterized by significant deficits in growth, facial anomalies, and brain dysfunction that result from the use of alcohol during pregnancy. FASD is the umbrella term for any confirmed prenatal alcohol exposure, including FAS. See for more information.
How Common is FAS in New Jersey?
It is difficult to provide specific estimates on how often FAS and FASD occur, but conservative estimates indicate that FAS occurs in 1 to 3 children per 1,000 live births, and FASD occurs in as many as 5 to 10 children per 1,000 live births. FAS occurs twice as often as Spina Bifida and five times more often than Down syndrome. Down syndrome and Spina Bifida, the two of the most commonly recognized birth defects, can be easily recognzied in newborns. In comparison, it can be extremely difficult to diagnose FAS and FASDs before 8 months of age.
One major frustration of working in the field of prenatal alcohol exposure is not knowing the full extent of the problem. Due to inadequate recognition, diagnosis and surveillance of FAS/FASD, in our state (as well as nationwide), the data has been unable to show a clear picture of the problem we face. As a result of a 1993 New Jersey drug study of laboring women, it is estimated that between 5.8% and 11% of pregnant women use drugs and/or alcohol during pregnancy. With approximately 111,000 live births each year in New Jersey, this can result in between 6,438 and 12,210 babies being exposed to dangerous substances in utero which, in many cases, can lead to a road range of lifelong disabilities. National aggregate data from 1998 from the Centers for Disease Control and Prevention (CDC) Pregnancy Risk Assessment Monitoring System (PRAMS) revealed that between 31.8% and 54.5% of women stated they used alcohol in the three-month period before finding out they were pregnant. The percentage of these babies who develop FAS/FASD is, of course, unknown. Over 5,000 children born in 2000, or 4.4% of total live births, entered New Jersey's Birth Defects Registry (NJBDR) because they met NJBDR eligibility criteria. FAS is a reportable birth defect within New Jersey and health care providers are required by New Jersey State law to report FAS to the NJBDR prior to five (5) years of age.
What Happens When a Child in New Jersey is Diagnosed with FAS?
New Jersey law requires that all children with the diagnosis of FAS, under five (5) years of age, be reported by physicians to the Birth Defects Registry of the Department of Health and Senior Services (). To date, there are very few children with an FAS diagnosis in the Birth Defects Registry, largely because very few physicians have been specifically trained to diagnose FAS and any FASD, and the general reluctance to "label" children with FAS or an FASD.
WHAT IS FAS?
Fetal Alcohol Syndrome (FAS) is a life-long birth defect caused by the maternal consumption of alcohol during pregnancy. Damage to the developing child can occur in varying degrees, with FAS being the most severe. Children born with FAS typically appear with clear evidence of anatomical abnormality, but for some, the diagnosis of FAS may not be possible before the eighth month. In addition to the major signs detailed below many children with FAS may be born with heart and kidney defects, problems with bones and joints, and other physical defects. See .The most common expressions of these abnormalities include:
- Growth retardation: Children with FAS are typically very small at birth and usually remain so throughout life. See http://www.cdc.gov/ncbddd/fas/fasask.htm and http://www.nofas.org/ for more information.
- Facial abnormalities: Children with FAS typically present with 1) small, widely spaced eyes, 2) a smooth philtrum (that is, no groove between the nose and upper lip),and 3) a thin upper lip.
- Central Nervous System Abnormalities: Children with FAS typically present with signs of intellectual disabilities or cognitive difficulties, developmental delays, hyperactivity, perceptual problems, poor coordination, and learning difficulties.
The "classical FAS" diagnosis represents only a portion of the larger number of children who have been prenatally-exposed to alcohol, with the larger portion identified by the terms Alcohol Related Birth Defects (ARBD), Alcohol Related Neurodevelopmental Disorder (ARND), and Fetal Alcohol Effects (FAE). The Seatle system uses terms such as static encephalopathy, sentinel physical findings and neurobehavioral disorder, as well. The generally accepted diagnostic label is FASD, and while there is no precise set of measurements for the diagnosis of FASD, the term, describes deficits that are less obvious, and less severe, than those of FAS. In April, 2004, the National Organization on Fetal Alcohol Syndrome (NOFAS) hosted a summit to discuss a consensus term for all disorders resulting from prenatal alcohol exposure. This summit resulted in the development of the term Fetal Alcohol Spectrum Disoders. The definition is as follows: Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral and/or learning disabilities with possible lifelong implications.
The child with FASD typically demonstrates a wide range of behavioral and learning difficulties, as well as varying degrees of developmental delays, but typically does not present with the craniofacial features described above for FAS and may not be classified with mental retardation. The subtlety of these behavioral and learning difficulties often result in the child being considered as disinterested and unmotivated to perform in school, and hence the necessary educational and behavioral supports needed to compensate for the difficulties are not provided. for a considerable list of informative sites and links related to potential developmental problems caused by the prenatal consumption of alcohol by women of childbearing age.
The term FASD is not intended for use as a clinical diagnosis. Depending on what diagnostic system is being used -- IOM, CDC or the Seattle 4 Digit Code -- you should use the diagnosis obtained after your multi-disciplinary assessment of the individual. You should include the term FASD when the diagnosis also includes the confirmation of alcohol exposure during pregnancy. The use of FASD currently has received support from many organizations, including the CDC, NOFAS, SAMHSA's FASD Center of Excellence, March of Dimes, and the FASD Task Force of the New Jersey Governor's Council on the Prevention of Mental Retardation and Developmental Disabilities.
What is New Jersey Doing About FAS?
New Jersey has pursued excellence in the identification and treatment of FAS since the early 1980's, with some efforts continuing across the years and others running for shorter intervals. Before 1981, there was relatively little discussion of FAS across the state, with the first statewide conference on FAS held in 1982 for perinatal professionals. In 1983, the Governor's Task Force on Alcoholism established the New Jersey Task Force on Fetal Alcohol Syndrome, and this task force then initiated a wide range of activities to promote prevention and education in both the public and private sectors. These outreach activities substantially increased public awareness of the dangers of consuming alcohol during pregnancy.
Despite the broadening of public awareness, there are relatively few direct services that have been made available to women who have used or are addicted to alcohol. The first major change in service delivery began in 1998 with the FAS Prevention Project. This project provides for an integrated statewide network of regionalized services intended to prevent FAS and FASD and to increase the likelihood of healthy children, and at that time, led to the requirement that each hospital have available a Risk Reduction Specialist. These specialists provide drug and alcohol assessment and screeening, education, and referrals for susbtance abuse treatment. Statewide efforts have included initiatives related to education and prevention, and each has met with varying degrees of success. A review of these programs noted that one missing component was the development of a statewide comprehensive system for the prevention, diagnosis, and treatment of FAS.
In early 2002, the New Jersey Department of Health and Senior Services established six regional centers for FAS and FASD. The Regional Centers:
- outreach to provide supportive services that help mitigate the expensive, life-long disorders associated with FAS and FASD
- provide identification, diagnosis and case management of individuals who were exposed to alcohol during the mother's pregnancy
- provide such services as identification and outreach, diagnosis, case management and family support (individualized according to center)
- ensure regional access to an appropriate team of professional and ancillary personnel (neurodevelopmental pediatrician, psychiatrist/psychologist, social worker, learning disabilities specialist, geneticist, etc.) for the diagnosis, treatment and education for FAS and FASD
- provide workshops and lectures on issues related to prenatal exposure to alcohol and FASD
- help organize regional public information and education campaigns
- ensure the availability of resources so that primary care providers within the regions disseminate information and literature that addresses the effects of FAS/FASD
- coordinate with the regional Maternal and Child Health Consortia (MCHC) regarding activities to influence and assist perinatal and family planning providers and primary healthcare providers to upgrade information and their ability to address substance abuse issues within their practice
- coordinate with the New Jersey Office For the Prevention of Mental Retardation and Developmental Disabilities
The Regional Diagnostic Centers continue to operate throughout New Jersey. They are available for diagnostic assessments, as well as lectures and workshops on various related topics. Each Center also works with their regional Maternal Child Health Consortia's Perinatal Addiction Specialists. Together, they offer information and workshops covering prenatal alcohol use and the lifelong effects.
NJ also is the first in the nation to offer a Perinatal Addictons Specialist Certification through the Certification Board of NJ. This specialty covers 30 hours training in this area, including 6 hours of training in the effects of prenatal exposure to alcohol, and now is a requirement for all new and renewing CADCs. For more information, please go to the website: CERTBD.com.
We encourage you to visit the following websites to learn more about FASD:
Detailed information regarding the costs of FAS can be found at http://www.acbr.com/fas/fasmain.htm and http://pubs.niaaa.nih.gov/publ... the Tenth Special Report to Congress on the effects of alcohol abuse and prenatal exposure to alcohol.
Epidemiological information about FASD is available at http://www.come-over.to/FAS/USbirths.htm
Information on the FASD Consensus state is available at www.nofas.org and family issues at http://www.nofas.org/family
Additional information on pregnancy and alcohol is available at:
www.cdc.gov/ncbddd/fas/
http://www.cdc.gov/node.do/id/0900f3ec8003da59
http://www.cdc.gov/ncbddd/fas/fassurv.htm
www.nlm.nih.gov/medlineplus/fetalalcoholsyndrome.html
Information on diagnostic criteria for FAS is available at:
http://depts.washington.edu/fadu/Tr.today.97.html
http://www.come-over.to/FAS/FASbrain.htm
http://www.nap.edu/readingroom/books/fetal/summary.html
http://depts.washington.edu/fadu/Tr.today.97.html
http://www.theuniversityhospital.com/healthlink/archives/articles/fas.htm
Information about FASD services in New Jersey and legislative mandates for reporting the diagnosis of FAS can be found:
http://www.state.nj.us/health/fhs/
http://www.njleg.state.nj.us/2004/Bills/S0500/289_I1.PDF
