– We are taking a big step backwards in time if there are fewer people with Downs. If we are not exposed to people with Downs, we will have a less inclusive society. That’s what MonaLisa Bakkelund, who is the mother of 5-year-old Fie, who has Down’s syndrome, says. Last year, 127 pregnancies with proven Down’s syndrome ended in abortion after week 12, according to recent figures from FHI. An increase from 54 per cent in 2021 to 73 per cent in 2022 means that nearly three out of four pregnancies with proven Downs now end with the woman having an abortion. The number is the highest number of pregnancy terminations after the 12th week that have been registered with Down’s syndrome since registration began in 1999. On Thursday, the government’s abortion committee will present proposals for changes to the abortion law, which has not been significantly changed in 45 years. Here, among other things, the dilemmas raised by fetal diagnostics will be problematised. Children with Down’s learn things in a different way, according to Fie’s mum MonaLisa Bakkelund. – They spend more time and other aids so that they now learn in a better way than before. Photo: Private MonaLisa Bakkelund is in no doubt what she thinks about the high abortion numbers. – It is a frightening development. Excluding children with Downs will create a society that fears difference. It will increase bullying, because people bully because they have no knowledge. She herself wants to talk about life and everyday life with children who have one too many chromosomes. – We have a richer life. Fie learns certain things faster than other children, such as politeness and humanity. – Following Denmark Randi Ødegaard is chairman of Down syndrome Norway. She is not surprised by the high abortion rates. – It is natural to assume that the changes in the Biotechnology Act will affect the proportion of children with Down’s syndrome in the years to come. Chairman Randi Ødegaard in Down syndrome Norway believes that the changes in the Biotechnology Act could have been a golden opportunity to take the group’s challenges seriously. Photo: Kjetil Solhøi / news In 2020, changes were made to the law that make it easier to find out whether a fetus has Down’s syndrome. Among other things, pregnant women can now take a so-called NIPT test, which shows whether there is an increased likelihood that the fetus has, among other things, Down’s syndrome. Already in the year after the changes, the decline in births of children with chromosomal variations began, according to the figures from FHI. Last year, 30 percent of the women who had an abortion after 12 weeks had taken the NIPT test, compared to 8 percent in 2021. In Denmark, hardly any children are born with Down’s after the law there was changed already in 2004. Last year, 175 pregnancies with Down’s were registered syndrome in Norway. There are 26 more cases than the previous year, and the highest number the Medical Birth Register has recorded since registration began in 1967. The numbers have increased in line with the age of the pregnant women. But it doesn’t just have to be about increasingly older mothers, according to senior doctor Liv Cecilie Vestrheim Thomsen at the Medical Birth Register at FHI. – In addition to increasing age, the registered increase can be due to better diagnosis and a more correct registration of fetuses and newborns with the diagnosis , she says. – This is the highest number of pregnancy terminations after the 12th week registered with Down’s syndrome since registration of pregnancy terminations began in 1999, says senior physician Liv Cecilie Vestrheim Thomsen at the Medical Birth Register in FHI. In 2021, 88 live children were born with chromosomal variation, last year the number had fallen to 64. The decline is due to several abortions of fetuses with different chromosomal variations. – There were some voices in the debate in 2020 who said that they did not believe that we would get the same development as Denmark. But why should Norway be different, asks Ødegaard. – Nor have any extraordinary measures been initiated to counteract the development we are now seeing, she adds. Down’s syndrome Norway is concerned that women who are pregnant, have just had a baby or have questions about Down’s syndrome must be able to ask competent and relevant people all the questions they have. – The community invests great resources here. Potentially 50-60,000 pregnant women will take fetal diagnostic examinations each year. In the rare cases where chromosomal variations are found, the woman is often in a very unexpected and unprepared choice situation. – This is Fie. With her we experience a lot of humor and a child who loves to give of her love, says mum MonaLisa Bakkelund. Photo: Privat Without sufficient resources for broad, competent, ethically responsible follow-up of the family after the test result, one can ask questions about how real options the woman is actually given, Ødegaard believes. – Three positions are not enough According to news’s knowledge, there are only three clinical social workers who work with fetal medicine issues in Norway. Two at St. Olav’s hospital and one at Rikshospitalet. The position at Rikshospitalet came into place after the Biotechnology Act was introduced in 2020. – Three positions in Norway are not enough. When all pregnant women are offered NIPT, we also expect that the mental health will be taken care of for those who are shown to be worried about the fetus, says Lena Ellingsen, who is secretary general of the National Association 1001 days. – We think that everyone should have a conversation with a social worker with further training in perinatal mental health before making a choice. Which choice the individual family makes is of course up to them, says Lena Engelsen of the National Association 1001 days. Photo: PRIVAT – E shock Ellingsen says that most parents who are told that the fetus or baby has Down’s or other chromosomal variations react with shock. – That is why it is important that parents are allowed to talk to qualified healthcare personnel. Lena Ellingsen believes that this offer should be in the specialist health service, linked to where the examinations take place. And that each healthcare organization should have at least two full positions for this purpose. – It is also important that parents can be offered further follow-up, both when the child is born or when you choose to terminate the pregnancy. – The parents must be reassured that they can cope with having a child with other needs. It is important that there are others who take responsibility and that you can be a parent, says MonaLisa Bakkelund. Photo: Privat The feeling of shock is something MonaLisa Bakkelund recognizes. – We had many prejudices, and hardly ever saw children with Downs. My husband in particular was worried about Fie’s future. He thought of all the problems that were going to come up. But help and support from those around me turned pessimism into optimism and hope for the future. – We were put in contact with someone who had a child with Downs. We were allowed to visit and that alone made the whole situation harmless. Skrinla contact family scheme Providing such information to pregnant women was a goal of the previous government, which initiated a contact family scheme. The plan was to do as in Denmark, where families with children with Downs welcome pregnant women, in order to nuance the picture of everyday life in families with children with an extra chromosome. The Støre government scrapped the plans and withdrew the NOK 20 million grant for the project: MonaLisa Bakkelund says that she and her family have been lucky. – We were put in contact with Bodø municipality, who came to our home with a physiotherapist, special education teacher and speech therapist. Then the nursery school took over the main responsibility and has taken up learning and further training directly together with the municipality. We know that this is not the case everywhere. Different municipalities have different follow-up. – Fie as an individual is unique just like her sister who is different in her own way but does not have chromosomal variation, says MonaLisa Bakkelund. Photo: Privat According to State Secretary Karl Kristian Bekeng (Ap) in the Ministry of Health, Norwegian municipalities have received extra money to provide good follow-up. – Families who have children with developmental disabilities must receive good follow-up from the support system. We have significantly strengthened the municipal economy in order to equip the municipalities to provide citizens with good health and welfare services. – I have respect for the choice that the individual woman and family make, says State Secretary Karl Kristian Bekeng (Ap). Photo: Esten Borgos / Borgos Foto AS news has asked the government whether it has considered how the change in the Biotechnology Act will affect the proportion of children with Downs. – For the government, it is important that women have self-determination, and that everyone considering an abortion receives good information, guidance and support from the health and care service. Early fetal diagnosis is part of this, says Bekeng. – A natural development Randi Ødegaard in Down syndrome Norway says that she understands women who want early fetal diagnosis. – It is completely natural. You cannot turn back technological progress. She can also understand those who want to terminate the pregnancy. – I can understand all the choices you have to make in that situation. It is the woman who knows best what suits her life. But as a society, I think we should be more critical of such a rapid rise. Today there are less than 10,000 people with Down’s syndrome in Norway. – In many ways, living with Down syndrome has never been better than it is today. They live longer, have better health, get higher education and are more represented and visible than ever. Nevertheless, there is little research-based knowledge about the living conditions of this group, she believes. – When, in addition, the inadequate follow-up around the testing potentially provides further fertile ground for stigma and discrimination, it is clear that we are concerned. The mandate of the abortion committee The government has decided on the following mandate for the committee: The committee is asked to review provisions in the Act on Termination of Pregnancy and consider alternatives to the current abortion boards. The committee must acquire knowledge about and assess the counseling and guidance of women who are considering termination of pregnancy, as well as the follow-up of women who have an abortion. The current organization of the offer should also be considered. In addition, the committee should compare the practice of tribunals and follow-up with other Nordic countries. The committee will consider an alternative to the current abortion boards that safeguard the current limit for self-determination at the end of the twelfth week of pregnancy and an alternative where the limit for self-determination is extended. The committee can propose changes in practice, law and regulations as a result of its recommendations. The committee must also assess the rules on reductions in the number of foster children. The following guidelines must be used as a basis for the committee’s work: Society must, as far as possible, ensure all children the conditions for a safe upbringing. Society must ensure that everyone receives ethical guidance, sexual education, knowledge about cohabitation issues and offers for family planning, so that the number of abortions is as low as possible. If there is reason to assume that the fetus is viable outside the mother’s womb, permission to terminate the pregnancy shall not be granted. If the pregnancy poses an imminent danger to the woman’s life or health, it can be terminated without regard to the provisions of the law. Healthcare personnel must still have the right to reserve for reasons of conscience against carrying out or assisting in termination of pregnancy. Source: Regjeringa.no On 1 June last year, Minister of Health and Care Ingvild Kjerkol (Ap) presented the new abortion committee. Here together with health policy spokesperson Hans Inge Myrvold (Sp) and former health policy spokesperson Cecilie Terese Myrseth in Ap. Photo: Vibecke Wold Haagensen / news
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Three out of four pregnancies with proven Down syndrome end in abortion – news Nordland
