Birth Defects in Ukraine, Ukrainian Alliance, Birth Defects Program

Active education of medical specialists and public concerning birth defects. All necessary conditions were created for this purpose by Child Development and Birth Defects Prevention OMNI-Center Network. There were held round-table discussions, conferences, a lot of publications in mass media, TV and radio broadcasts in all oblasts. More than 10000 flyers, booklets and fact sheets were distributed. Among the participants of these actions there were more than 1000 physicians, teachers, students of medical colleges, students of senior classes.

First married couple receiving information about folic acid
usage to prevent neural tube defects from UABDP and folic
acid pills from "Women for Future" political association
in Rivne Registry Office

Due to the initiatives of the UABDP and Alliance for the Prevention of Birth defects directed to preventive folic acid usage the Political Organization "Women For Future" held common educational action in Rivne Municipal Registry Office in November 2001. During the action there were distributed informational materials concerning neural tube defects prevention with folic acid and newly married couples received folic acid pills. The action was highlighted in mass media. Besides, during 2002-2003 there were held some round-table discussions: "Woman's Health" and "Women for Healthy Lifestyle" with the participation of business groups' representatives from Rivne and rayons, oblast medical specialists, teachers and social workers. There were discussed the following problems: birth rate decreasing, high level of cancer diseases among women, birth defects in children, especially neural tube defects and ways of their prevention by folic acid usage, fetal alcohol syndrome prevention. More than 500 women took part in the round-table discussions and each of them received some informational materials concerning above mentioned problems.

The collaboration with oblast scientific medical libraries was continued. In Volyn, Rivne and Khmelnytsky OMNI-Centers they got possibilities to use computers with unlimited access to Internet with the purpose to search medical information, especially on maternity and childhood care for the medical specialists of the oblasts. For further improvement of the collaboration UABDP gave fax-machines to oblast medical libraries of Volyn, Rivne and Khmelnytsky Oblasts and sets of books to rayon medical libraries ("Birth defects book for parents", "Birth Defects book for specialists", "Growth References", "Basis of legal protection of disabled children", "Down syndrome: diagnosis, care and prevention").

There was established collaboration with Lviv, Vinnytsya, Crimean Medical Universities, Kyiv Medical Academy of Post-Diploma Education named after P. Shupyk, Ternopil Medical Academy and oblast medical colleges.

It should be noticed that Lviv National Medical University purchased a computer with a scanner and a printer which was connected to Internet in the Volyn OMNI-Center for interns to work. The resources of the Program are used by interns for medical information searching, education and preparing for exams.

Interns using computer (left) bought by Lviv National
Medical University

With this purpose programmer of the Volyn OMNI-Center I. Kuznetsov created software "Krok-3" for education of interns and taking exams. Educational and exam materials (questions and answers) were prepared by the Lviv National Medical University.

With the purpose of spreading knowledge concerning birth defects in 1999 neonatologists from Volyn and Rivne Oblasts received 25 sets of books "Neonatology" edited by N. Shabalov and "Neonatology" edited by T. Gomella. In 2000 inter-regional medical genetics centers in Ukraine received 2 books "Counseling Aids for Geneticists" and "Growth References: Third Trimester to Adulthood" on behalf of Dr. R. Stivenson. Oblast medical genetic offices received CDs "A Catalog of Human Genes and Genetic Disorders" on behalf of Prof. Victor McKusick. Program Centers in Kyiv, Rivne, Lutsk, Khmelnytsky, Kherson and Simferopol received sets of books and educational video materials.

Books distribution among neonatologists of Rivne Oblast

Publishing activities. In collaboration with other oblasts there were published a number of text-books, booklets, flyers, posters on birth defects problems.

During 2000 there were three issues of periodical publication "Geno-Terato-Epi-Tome" (3000 copies each):

In January 2003 Lutsk Printing House of weekly newspaper "Visnyk" finished publication of common work of all Program OMNI-Centers: "Growth References: Third Trimester to Adulthood", "Birth Defects Book for Specialists" and "Birth Defects Book for Parents" - 1000 copies of each book.

It should be noticed that the book "Growth References: Third Trimester to Adulthood" is a popular manual for physicians of different specialties created by scientists of Greenwood Genetic Center and it has been translated into Ukrainian. This book highlights information about growth standards of a healthy child from the moment of conception to adulthood. It also includes the unique aspects of development of children with specific diseases and birth defects (examples - charts 1, 2, 3 - children with Down syndrome).

Ukrainian-American Birth Defects Program published this book with the purpose of giving physicians access to modern complex information about human growth and development. Without knowing mechanisms of growth and development it is impossible to create individual conditions for the realization of genetic program of an organism's life preserving health, guaranteeing procreation, excluding disabilities and sudden death. When creating such a reference book the staff of the Greenwood Genetic Center followed exactly the same philosophy. Their slogan - "We want to work a way into the 21st century with the hope for each family having a risk of a genetic disease" is quiet close to our physicians.

The "Birth Defects Book for Specialists" and "Birth Defects Book for Parents" were created using materials from Ukrainian part of I.B.I.S. (International Birth Defects Information Systems). They include information about birth defects.

100 copies of each mentioned above books were delivered to all Ukrainian-American Birth Defects Centers for distribution. 60 copies of each book were given to prominent scientists and physicians of Ukraine who participated the All-Ukrainian Conference of Neonatologists held in April 2003 in Kyiv. Besides, the participants of the conference ordered more than 150 copies of the books which they would receive during their visits to OMNI-Centers in Kyiv and oblasts participating the Program.

Translations and Printed Materials of the Program:

Some Key UABDP publications

Growth References: Third Trimester to Adulthood.
Birth Defects Book for Specialists.
Birth Defects Book for Parents.
"Folic Acid and the Prevention of Disease" - Report of the British Committee on Medical Aspects of Food and Nutrition Policy.
Down Syndrome: Diagnosis, Care and Prevention.
Kleinfelter Syndrome (for Parents).
Cystic Fibrosis (Text-Book for Physicians and Parents).
Fetal Alcohol Syndrome (Text-Book for Parents and Teachers).
Minor Malformations in Newborns (Text-Book for Physicians) - is being prepared for publishing.
Study Difficulties (Brochure About Children Who Have Study Difficulties for Teachers and Parents).
Phenylketonuria Text-Book for Teachers and Psychologists.
Neural Tube Defects Flyer (Anencephaly, Spina Bifida).
Flyer "Sexually Transmitted Diseases".
Ukrainian-American Birth Defects Program Flyer.
Flyer "Phenylketonuria".
Flyer "Folic Acid", etc.

For improving communications among rayon hospitals, maternity institutions and Child Development and Birth Defects Prevention OMNI-Centers in Rivne and Volyn Oblasts there were given fax-machines to physicians of maternity hospitals, mewborns pathology departments, scientific medical libraries, Preschool Pedagogics and Psychology Department of Rivne State Humanitarian University. There were delivered 32 fax-machines with the help of which there was created a telecommunication information system.


Information telecommunication system established through the fax-machines granted by the Ukrainian-American Birth Defects Program

In 2001 and 2002 the Volyn and Rivne OMNI-Centers were visited by representatives of the Health Care Ministry of Ukraine Drs. T. Irkina, V. Pedan and Y. Polyachenko and representatives of the United State Agency for International Development (USAID). They highly appreciated all aspects of the UABDP activities.

Health Care Ministry of Ukraine and USAID representatives
visiting Volyn OMNI-Center, 2001

Chief Assistant of Health Care Minister Dr. Y. Polyachenko
during his visit to Volyn OMNI-Center, 2001

In February 2003 Vice-Premier of Ukraine Mr. D. Tabachnyk, Health Care Minister Dr. A. Pidayev, Governor of Kherson Oblast Mr. A. Yurchenko and Head of Kherson Health Care Department Mr. D. Dyachuk visited Kherson Regional Children's Clinical Hospital and OMNI-Center.

First Ukrainian genetic website "I.B.I.S. - International Birth Defects Information Systems" has been created - http://ibis-birthdefects.org/start/ukrainian/index.htm. For the period of the Program's activities IBIS became a big website with a good reputation. It can be found by all big search engines in Internet.

The structure of the site is very simple. IBIS consists of 3 informational channels with their beginning on its home page. The first channel is devoted to the site description, its standards and other related sites. The second channel includes information about birth defects, genetic and teratological pathology and most important world organizations related to birth defects. The third channel presents our partners and sponsors. Main sponsors are represented by the Ukrainian-American Birth Defects Program (UABDP) - http://ibis-birthdefects.org/start/uabdp.htm, United State Agency for International Development (USAID) - http://www.usaid.gov, University of South Alabama (USA) - http://www.usouthal.edu/genetics, International Horowitz Competition of Young Pianists - http://www.horowitzv.org, Ukrainian Alliance for Birth Defects Prevention - http://ibis-birthdefects.org/start/ukrainian/broch.htm, Etymology of Medical Terms in Different Languages site "Pandora Word Box" - http://www.pandorawordbox.com/index.htm and many others.

Among materials presented on the website there is general information about pregnancy planning and pregnancy, neonatal and pediatric diseases, genetic and medicine. Here one can find links to information concerning placental anomalies, environment influence on fetus development, teratogenic influence of radiation and different medications, drugs, alcohol, perinatal infections, etc. Besides, if you search for information about different medical schools, professional unions, libraries, medical journals, educational courses and programs, funds, foundations, parental support groups, world and governmental organizations, medical dictionaries and glossaries, medical and general search engines in Internet, you will save time by visiting IBIS. And finally, you can find on this site useful and detailed information about specific birth defects, syndromes and anomalies choosing from a list on the page "Specific Birth Defects-Syndromes- Malformations-Anomalies" (http://ibis-birthdefects.org/start/drophealth.htm - in English, http://ibis-birthdefects.org/start/ukrainian/udrophl.htm - in Ukrainian). All this information is divided into 2 categories - for specialists and parents having children with birth defects and population. Currently the Ukrainian part of IBIS includes nearly 200 fact sheets written by Ukrainian authors.

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