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Ukrainian-American Birth Defects Program

Taking Aim at Maternal PKU
(2-nd Meeting of All-Ukrainian Organization of PKU Children Parents and Its Advocates)

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Ms. O. Paskhalna,
Head of the Board,
All-Ukrainian Organization of PKU Children Parents

The 2nd Meeting of All-Ukrainian Organization of PKU Children Parents took place on December 7, 2002 in Kyiv under the aegis of the Ukrainian-American Birth Defects Program, Ukrainian Alliance for the Prevention of Birth Defects, and Nurticia-Ukraine Company. This event has assembled more than eighty parents that have PKU children from all over Ukraine, representatives of the regional PKU organizations, and medical care providers.

The meeting participants
The meeting participants

The goal of the meeting was to promote dissemination of knowledge regarding PKU diet management among women of reproductive age and girls-teenagers who have PKU, as well as among their parents in the view of maternal PKU; to improve social protection of women who have children with PKU, and to work out further measures regarding birth defects prevention.

Drs. I. Barylyak (President of the Ukrainian Alliance for the Prevention of Birth Defects), N. Kopylova (Associate Professor of the Republican Center for Neonatal Screening, Moscow, Russia), N. Helner (Head of the Interregional Medical Genetics Center, Lviv) were among the participants.

According to the report of Ms. O. Paskhalna (Head of the Board of the All-Ukrainian Organization of PKU Children Parents), the period expired from the previous annual meeting was a year of fighting for the rights of disabled children who suffered from PKU. Within this period the organization consolidated and number of its members considerably increased. The set of measures was implemented to get PKU formulas for children 0-4 years of age. The above measures included letters to the Supreme Rada, to the Ministry of Finance, to the Ministry of Health, organization of press-conferences, etc. Presently children from the relevant age group receive diet treatment in the centralized manner taking into account their individual tolerance level.

Dr. I. Barylyak reported on the progress in implementing the PKU screening program in Ukraine and emphasized the importance of undertaking the appropriate measures to introduce the comprehensive screening coverage.

The heads of the regional organizations took the floor and highlighted the issues of operation in the regions. It is always interesting to share the experience with colleagues. Ms. Irina Markova (Donetsk) spoke about conducting the parental support group meetings on a regular basis (every two months). These meetings are combined with medical consultation and legal advice two times a year. It is organized in a partnership with Donetsk Interregional Medical Genetics Center. Zhytomyr PKU Charity Fund (Ms. Tetyana Lynevych, the head) works actively on fundraising for purchasing the low-protein products. Unfortunately, their achievements are poor. The donated 500 hryvnas wasn't enough to cover the needs of 34 children. Mr. Vladimir Sushkov (Odesa) shared the positive experience of his family in planning of pregnancy, and using the prenatal diagnostics. The audience congratulated the Sushkovs with the birth of a healthy girl (their first child, 16 yeas old daughter has PKU).

Lecture on diet and modern approaches to PKU management by Dr. N. Kopylova (Associate Professor of the Republican Center for Neonatal Screening, Moscow) drew significant interest of the parents. It was emphasized that positive result of PKU treatment depends on how intensively parents work on their child mental development and development of his/her every day life skills. There are five core stones to achieve the positive results: neonatal screening, diet, positive communication with family, education and social adaptation.

It was interesting to know that there is a new approach for choosing the right low-protein formula for children. It is in chemical properties of its solution. It should have an appropriate concentration not to affect the process of assimilability. Otherwise, it causes nausea, vomit, and diarrhea. This is of special importance for children up to three years old, and is the most common reason of individual intolerance to the various low-protein formulas.

As for maternal PKU, all women with PKU should start the diet and PHe (phenylalanine) blood test control two-three months before conception.

There are some new achievements in PKU treatment of patients older than 10 years: PreKUnil tablets produced by Danish company restrict the assimilation of phenylalanine in the brain while at the same time carrying large quantities of amino acids that function as building blocks for the brain neurotransmitters. This combination enables a PKU patient to tolerate an almost normal diet.

Dr. N. Kopylova's lecture
Dr. N. Kopylova's lecture

The training on PKU diet management was held for the medical geneticists as well. It took place under the aegis of OMNI-Center, Kyiv, and under support of the Ukrainian-American Birth Defects Program. The report on this event will be presented on IBIS separately by Dr. Halyna Skyban, the head of the medical expert team, OMNI-Center, Kyiv. Apropos, Natalya Kopylova, who is a dietician by her background, and Dr. Alexandr Baykov, Head, Republican Center for Neonatal Screening, Moscow, are the authors of the guidelines for parents "Delicious Diet. How to Live with PKU" and "Maternal PKU". These editions hold much favor not only in Russia but in other countries of NIS.

Dr. N. Helner (Head of the Interregional Medical Genetics Center, Lviv) had a presentation on maternal PKU in Ukraine. It was emphasized that it is absolutely necessary to extend the diet treatment on the women with PKU who are the possible mothers in order to prevent birth defects in their children. The level of Phe (phenylalanin) should be under control and not exceed 2 mg%. According to statistics, the women with untreated PKU have such risk of their pregnancies:

As for Lviv, there were two incidences of maternal PKU. Both women were out of preconception dietary control. Unfortunately, both babies were born with microchephaly.

The approaches and the strategies for the further activities of the All-Ukrainian Organization of PKU Children Parents were discussed in detail after completing the presentations.

Here are the resolutions of the annual meeting:

The closing remark has been made by Prof. Ihor Baryliak, President of the Ukrainian Alliance for the Prevention of Birth Defects. In conclusion, 100 copies of "Maternal PKU" guidelines have been handed to the representatives of the PKU organizations on their written request (90 copies - to All-Ukrainian Organization of PKU Children Parents, and 10 copies - to "Pokolinnya" Charity Fund for PKU affected. They will be distributed among the young women suffering from PKU and teenage girls. Publication of this edition became possible with support of the Ukrainian-American Birth Defects Program. Now, every Ukrainian woman who has PKU is provided with a copy of "Maternal PKU" guidelines free of charge to be prepared for pregnancy, and have a healthy baby.

Dr. I. Barylyak (left) presents new PKU materials to O. Paskhalna
Dr. I. Barylyak (left) presents new PKU materials to O. Paskhalna

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21/March/2003 sl