{"id":134368,"date":"2025-11-15T07:58:24","date_gmt":"2025-11-15T07:58:24","guid":{"rendered":"https:\/\/www.newsbeep.com\/il\/134368\/"},"modified":"2025-11-15T07:58:24","modified_gmt":"2025-11-15T07:58:24","slug":"women-warned-over-meds-with-high-risk-for-serious-birth-defects","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/il\/134368\/","title":{"rendered":"Women warned over meds with high risk for serious birth defects"},"content":{"rendered":"<p class=\"body-paragraph articleLinkText  [&amp;_p]:tit-sub-xl tit-sub-xl md:[&amp;_p]:d-tit-sub-xl md:d-tit-sub-xl mb-[1.3rem]\">One mother desperately wants others to know the true consequences of taking medications during pregnancy that are known to cause serious birth defects \u2013 education she says she missed out on. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Thousands of women and girls in New Zealand are on the anti-seizure medicines, which if taken during pregnancy have a risk for physical deformities and damage to the brain and heart for the baby.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">That is something Jacki Morris has been living with since her son Matthew was born. He is 24 now but has the mental age of a one-year-old.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Even before Jacki got pregnant, she did everything right. When she and her partner Grant started thinking about starting a family, they went to a maternal foetal medicine specialist. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Diagnosed with epilepsy at the age of seven, Jacki has been on anti-convulsant medication most of her life to prevent her seizures. She asked the specialist if it was safe to keep taking the medication, called Tegretol (carbamazepine), if she got pregnant. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cHe said that would be fine. I would just need to look for cleft palate,\u201d she says. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Jacki and her partner researched cleft palate extensively, a birth defect where the roof of the mouth doesn&#8217;t fuse properly to the nose. They decided the life-changing benefits of staying on her medication outweighed the potential risk. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">What they didn\u2019t get told was the risks were far greater than this. Their boy Matthew is non-verbal, and has multiple heart conditions and brain damage. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cIf I didn&#8217;t take the medication, I would have a 24-year-old son who would be out living a full life in the community with a job and would possibly have a partner or have his own children. But he will never achieve any of that,\u201d she says. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cHeartbreaking doesn\u2019t even cut it. You feel guilty because you were the one who took the medication. But I\u2019ve since learnt New Zealand has known since the 1960s this medication isn\u2019t safe during pregnancy.\u201d <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Now the chairperson of FACSNZ, a support and awareness charity for the condition, Jacki hopes to educate others about the risks and the options people have. <\/p>\n<p>What is foetal anti-convulsant syndrome?<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Foetal anti-convulsant syndrome (FACS) occurs when babies are exposed to anti-seizure medications during pregnancy. It can cause a range of defects such as dysmorphic facial or body features, neurodevelopment or cognitive difficulties and damage to the brain and heart. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Some babies exposed to these medications during pregnancy can also die before or shortly after birth. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">The medications are also used to treat mood disorders such as bipolar and chronic pain such as migraines. <\/p>\n<p><img decoding=\"async\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2025\/11\/anti-convulsant-medication-matthew-4KTADSXVUFFVPLOTQSVNDKMLLQ.png\" alt=\"Matthew has the mental age of a one-year-old.\" width=\"800\" height=\"449\" loading=\"lazy\"\/><\/p>\n<p class=\"ImageMetadata__MetadataParagraph-sc-hi5x8q-0 cWTYyG image-metadata\">Matthew has the mental age of a one-year-old. (Source: Supplied)<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cRed list\u201d medications, which have the highest risk, include sodium valproate, topiramate, phenytoin, primidone and phenobarbital. But there are several other medications which also pose a risk. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Ministry of Health data from 2024 shows nearly 14,500 females aged 10\u201359 in New Zealand are taking one of the eight red list medicines. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Dr Jin Russell, a paediatrician and Chief Clinical Adviser for Child and Youth Health at the ministry, says sodium valproate carries the highest risk of them all. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cIf 100 babies are exposed to sodium valproate before they&#8217;re born, 24 out of 100 would develop congenital heart defects, spinal defects, and possibly facial defects as well,\u201d she says. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">The baseline risk for these malformations among the general population is about two out of 100. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Babies exposed to sodium valproate during pregnancy are also eight times more likely to need increased support when they go to school due to autism, ADHD and other learning difficulties. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">It\u2019s unclear how many New Zealanders are diagnosed with FACS. There is no precise data because individuals are often treated by specialist paediatric clinics in the private sector and this patient data is not publicly available. <\/p>\n<p>Moves to decrease the use of high-risk medications <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">In 2024, the United Kingdom made it a requirement for two specialists to approve a new prescription of sodium valproate to help reduce the risk of foetal anti-convulsant syndrome. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Russell says so far, these changes have not been adopted by other countries, and there are currently no plans to adopt this approach here in New Zealand. Instead, the Ministry of Health is focused on increasing education among patients and the health sector. <\/p>\n<p><img decoding=\"async\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2025\/11\/dr-jin-russell-I7WWAVSE3JGCHA5YZASRSCNIXY.jpg\" alt=\"Dr Jin Russell says more education is needed for young people on these medications. \" width=\"800\" height=\"449\" loading=\"lazy\"\/><\/p>\n<p class=\"ImageMetadata__MetadataParagraph-sc-hi5x8q-0 cWTYyG image-metadata\">Dr Jin Russell says more education is needed for young people on these medications.  (Source: Supplied)<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">She says there are signs these awareness campaigns are having an impact. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cDispensing data has shown that over the past decade, there has been a steady reduction in the number of women taking sodium valproate,\u201d she says. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cHowever, over the same time period, we&#8217;re also seeing an increase in women prescribed other medicines which are also linked to FACS, albeit at a lower risk.\u201d <\/p>\n<p>So what should you do if you are taking anti-convulsant medications? <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">The worst thing you can do is abruptly stop taking these medications as this can be dangerous for your health, says Russell. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Instead, if you are taking one of the medications, you should book an appointment with your doctor to talk about what medications you are on. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Russell recommends that you make a habit of seeing your doctor every year to talk about any life changes because this may change what medication is best suited for you \u2013 for example, if you get your period, are having sex or are thinking about having a baby. <\/p>\n<p>Ask about: Contraception <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">If you are not planning to have a child and want to stay on this medication it is recommended that you go on two different types of contraception to prevent pregnancy. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cTaking these medicines can affect the efficacy of a contraceptive medicine, so that is why it\u2019s important to use two,\u201d Russell says.<\/p>\n<p><img decoding=\"async\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2025\/11\/anti-convulsant-medication-jacki-pregnant-EFJ4CD2EUBH4VJ3GB5IHJZQGPU.png\" alt=\"Jacki during her pregnancy.\" width=\"800\" height=\"415\" loading=\"lazy\"\/><\/p>\n<p class=\"ImageMetadata__MetadataParagraph-sc-hi5x8q-0 cWTYyG image-metadata\">Jacki during her pregnancy. (Source: Supplied)<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Long-acting contraception such as an intrauterine device (IUD) or the progestogen-only implant are the most effective options. Depo Provera injection, the combined oral contraceptive pill or the progestogen-only pill are seen as less effective options. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Using condoms, withdrawal or fertility\/period tracking aren&#8217;t recommended as your main form of contraception because they&#8217;re more likely to fail. <\/p>\n<p>Ask about: A pregnancy plan <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">If you want to get pregnant, speak to your healthcare professional 6\u201312 months in advance to review your medication. This could look like lowering your dose or switching to a safer medication during pregnancy. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">If you are breastfeeding, Russell recommends informing healthcare providers so babies can be monitored for any side effects or a safer treatment plan can be made. <\/p>\n<p>Ask about: Informed consent <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Patients should be given clear information about medication risks during pregnancy. If you feel you don\u2019t have enough information, ask questions and seek a second opinion, Russell says. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Jacki recommends writing notes during your appointment and bringing a support person who can support you and help make sense of the information. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cSometimes you feel like there&#8217;s a power imbalance because your doctor is the specialist, but it should always be a two-way relationship. Ask them questions, you know your body best. And don\u2019t be afraid to do your own research with reliable sources or get a second opinion,\u201d she says. <\/p>\n<p>\u2018I wish I had known what I do now\u2019 <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Looking back, Jacki Morris says she wishes she had access to the information that is available now. At the time, she says there was awareness about alcohol foetal syndrome, but not FACS. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cPeople would always say to me, did you smoke or drink during your pregnancy? But no one ever said to me, what are the medications that you were on during your pregnancy? <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">\u201cWe need to be comfortable with having really open and empathetic questions about what medications pregnant people are on, because you just don\u2019t know until you know if one of them is harmful. We just need to know.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"One mother desperately wants others to know the true consequences of taking medications during pregnancy that are known&hellip;\n","protected":false},"author":2,"featured_media":134369,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[163,85,46,482,83776],"class_list":{"0":"post-134368","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-medication","8":"tag-health","9":"tag-il","10":"tag-israel","11":"tag-medication","12":"tag-re-news"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/134368","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/comments?post=134368"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/134368\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media\/134369"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media?parent=134368"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/categories?post=134368"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/tags?post=134368"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}