Non Invasive Prenatal Testing
What is NIPT and is it right for you?
In the NHS, women in England are offered an initial screening test for Downs syndrome (trisomy 21), Edwards syndrome (trisomy 18) and Patau’s syndrome (trisomy 13).The test is the “combined test” (sometimes the quad test) but this has a high false positive rate (worrying people unnecessarily) whilst also missing a significant number of affected babies. Those who get a result suggesting a chance of 1 in 150 or greater will be offered an invasive test. In some hospitals NIPT is available in this situation, but it is not yet a standard part of NHS care.
NIPT stands for Non Invasive Prenatal Testing. This is an area of major development in pregnancy care, but it is generally used to refer to a test for these three conditions which are the most common chromosomal issues to affect live-born babies.
NIPT works in a totally different way to the standard combined or quad tests. It looks at fragments of your baby’s DNA in the mother’s blood. It can be used in pregnancies using donor egg or sperm, surrogate pregnancies and twin pregnancies. Angie will discuss this with you, including whether (and why) you should also have the NHS standard combined test (the answer is probably yes!).
It is referred to as “non-invasive” because until recently the only way of getting an accurate assessment about whether your baby was affected by these conditions was to have an Invasive test – chorionic villus sampling (CVS) or amniocentesis (amnio). Although these are excellent tests which can give a definite answer, they pose a risk of miscarriage because of the need to insert a needle into the uterus. For many people that risk feels unacceptable.
NIPT describes the type of test, there are many trade names for tests made by different manufacturers. These include The SAFE Test, Iona, NIFTY, Harmony, Panorama, Verify, Serenity and more. These tests all use the same biological principles but have subtle differences in the technology used. Some of the tests offer to report on the chance of other conditions, but these tests are not yet verified to be reliable. With NIPT currently it is not the case that the most expensive option is usually the best!
NIPT does NOT give a definite answer. It remains a screening test, meaning that it tells you how likely something is.
Walking With You offers The SAFE Test. This is a test which is processed in the UK, in a laboratory at St George’s hospital, Tooting, which also processes samples from the NHS. This provides confidence regarding quality assurance and back up in the case of any issues arising. The reporting process is secure, using an electronic portal which tracks samples from the initial collection to the issue of the report to us.
How and when is it done?
You need to have had an ultrasound scan which confirms the gestational age. Walking With You does not undertake ultrasound scanning, but can provide information about this if you have not already had one.
Angie will visit you at home, although other arrangements can be made if this is not suitable for you. Appointments are offered throughout the week, including at evenings and weekends
A sample of the woman’s blood is taken, usually from the arm, as a standard blood test. Angie then sends the sample to the laboratory. They aim to issue a result within 5 working days from receipt of the sample. It can be done from 10 weeks gestation, although there is often a good argument to wait a little longer. This is discussed with clients on an individual basis. It can be done at any later stage of pregnancy right up to birth.
Why have the test with Walking With You?
Many clinics offering this service simply take the blood sample, get you a result and then advise you to contact your NHS provider in the case of an unusual or “high chance” result.
Walking With You provides a much more comprehensive service. Angie will explore your thoughts about what the test offers and might mean for you, ensuring that you understand the implications and limitations of testing. She seeks to ensure that you have a balanced understanding of the conditions concerned , so that you can think carefully about how such difference might affect your family. Angie takes the view that difference is not necessarily a problem , and indeed can make life much more interesting, and so she prefer nots to talk about the “risk” of these conditions. She understand that many people, for widely varying reasons, feel that this is information they wish to have. Once the result is known, it is provided to you in a face to face consultation, to ensure that you understand the result and that any questions are answered.
In the case of an unusual or screen positive result, Angie is skilled and experienced in supporting you to work out “what next” and can make any necessary referrals for further care.
For those who continue their pregnancy knowing that their baby is almost certainly affected by one of these conditions, a comprehensive package of midwifery care and support is available through pregnancy, birth and beyond.
Support is also available for those who decide to end their pregnancy. Walking With You is a non-directive service, supporting choice and empowering families to make the decisions that are right for them.
How much does it cost?
A home visit (in Surrey or Sussex) and the test, including the initial consultation and a follow up to share and discuss the results with you costs £345.
Speak to Angie
60 Ockley Way
West Sussex BN6 8NF
Angie Bowles, specialist midwife supporting choice. Reach out for help or advice today. Angie reads and replies to every one.