When you are pregnant there are suddenly a great many important decisions to make. Decisions which may affect the rest of your life. There are many antenatal tests available, some offered by the NHS, others only available privately. It can be hard to work out what is useful and appropriate for you. I talk to many women who feel confused about what to do, both as they choose what tests to have and as they then seek to understand the results. As a midwife who has specialised in screening and fetal medicine within the NHS, I now offer my services privately to help you make the best decisions for you and to support those for whom antenatal tests raise additional questions or concerns. Here are five issues to think about.
- All tests are optional Every woman booked for maternity care with the NHS is offered a range of tests and you should have been given a copy of the leaflet below. If you choose not to have some of these tests your midwife is expected to ensure that you understand the nature and purpose of the test. Sometimes women say that they feel they are being judged if they decline some of the antenatal tests, but your midwife needs to check that you have not made your decision based on misunderstanding. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/839589/Screening_tests_for_you_and_your_baby_information_leaflet.pdf
- Family origins and biological parents To assess your baby’s chance of having an unusual haemoglobin (oxygen carrying part of the red blood cells), the midwife will ask about your family origins. It is important to answer this fully because in most areas of Surrey, Sussex, Hampshire and Kent the answers will determine exactly what testing is done. What matters is where the baby’s biological parents families came from in the world. Certain types of haemoglobin originated in different areas of the globe, and are passed on from parent to child. This means if your family have been in the UK for several generations, but originated from, for example, a Mediterranean or African country, you need to say so. If you have used donor eggs or sperm or you were adopted, please don’t assume the answer – there is an option for “family origin unknown” on the lab request form which will trigger full testing. Tell the sonographer at the time of your first scan if your pregnancy is the result of IVF or if a donor egg was used. This affects the calculation of the combined test.
- The combined test is a screening test for up to three conditions – Downs’s, Edward’s and Patau’s syndromes (trisomy 21,18 and 13). It is not “making sure that everything is ok”. Sadly no antenatal tests can do that. A screening test gives a result indicating if the specific conditions are likely or not likely, expressing it as a “one in something” chance. If your result indicated a change of 1 in 150 or more, the NHS will offer and fund additional testing if you want it. The combined test has a very significant number of false positive and false negative results – worrying many people unnecessarily whilst missing a significant number of affected babies, As with all antenatal tests, these additional antenatal tests are optional. Testing is offered to enable you to plan and make decisions if you wish. Before you decide about screening, do you know what these conditions are? Do you know how they might affect your child? How can you decide whether to test unless you have this information? I will write another blog post soon about this. There should be no expectation that you would end a pregnancy if your baby is found to have one of these conditions. Sadly, however, I talk to many women who feel that there was an assumption that they would opt for termination, with no other options being explained. http://www.yourmidwife.org.uk/choice/fetal-abnormality-and-informed-choice/
- Harmony is the trade name for one type of non-invasive test (NIPT). There are many others including The SAFE Test which is performed in a specialist lab at St Georges’ hospital, Tooting. http://www.stgeorges.nhs.uk/service/maternity-services/your-pregnancy/fetal-medicine-unit/the-safe-test NIPT is a fairly new and highly sophisticated screening test for the same conditions as the combined test. It will identify almost every baby affected by one of these three conditions, and has a small false positive rate. Although technically it can usually be performed from about 10 weeks gestation, the maximum reliability comes from doing it after the combined test and factoring in information from that. Some versions of NIPT offer assessment for other, much rarer conditions, but this should be viewed with caution because these are not yet validated and have a very high error rate. If you are considering NIPT, please choose carefully who to go to. This is an issue of national concern http://www.nuffieldbioethics.org/blog/nipt-private It is extremely important that the person doing the test has a detailed understanding of the issues, has time to discuss the possible implications of testing with you and provides a robust follow up service in the case of a “high chance” result. It is because I have met so many people who have had poor experiences that I now offer NIPT. It is very important to understand that NIPT is not a direct alternative to invasive tests such as CVS or amniocentesis. The decision which is appropriate needs to be made based on a detailed discussion with a specialist in this field. Please phone me if you need information and advice about your particular situation.
- Ultrasound scans can only identify some issues and paying for extra scans may not be of any benefit to you or your baby. If issues of concern arise which would benefit from monitoring through scanning, the NHS should provide this. Paying for additional scans with a private provider if you have concern about your baby’s wellbeing can cause unnecessary concern or confusion. Fetal medicine services in the NHS in the south of England are very good indeed, with some world experts based in our area. Many unusual findings reported on scans are just that- unusual, but are not damaging to the baby. Obviously as a parent anything unusual is likely to give you something else to worry about, but good quality information can really help. The sonographer is required to report unusual findings, but it can be hard to work out if this is something you should be worried about. Do ask if things are said which you don’t understand. You can ask the sonographer or ask to speak to the midwife in charge of screening at your hospital. I am always happy to discuss concerns and to provide information, visiting you at home and providing time to discuss your concerns fully.
Hopefully this has given you food for thought. If in doubt – please ask. If you prefer not to have a particular test, remember that you can decline. If issues of concern are identified and you would like time and space to process the information with me, please do get in touch.
If you want extra support and continuity throughout your pregnancy, whether there are additional concerns or not, I can provide a cost effective package of care to complement what the NHS provides.