What about confidentiality?
In accordance with my professional registration, I will treat any information you give me as confidential. Obviously there are times when sharing information is absolutely necessary, enabling us to work together with other healthcare staff, but this would always be done with your agreement. Sometimes you may want to discuss complicated feelings with me which you do not yet feel able to talk to your family about. There may be factors in your life that are particularly private, or you may be anxious to keep your pregnancy and associated issues away from colleagues or neighbours. Sometimes there are tensions between the culture or faith tradition that you come from and a decision you now feel to be right. I do not wear uniform, my car is not sign written, so it will not be obvious to anyone who I am when we meet, unless you choose to tell them.
If my baby is found to have a major problem do I have to have a termination?
Absolutely not! Angie meets women who have declined tests and scans in pregnancy because they believed this to be true. It is very important to be clear that screening tests and scans are ways to assess baby’s wellbeing and growth, but it is you who has the responsibility and the right to make decisions about your baby.
If it is suspected that your baby may have a problem, this should be explained clearly to you. You should be provided with information about the options for any additional testing which may be helpful and the effect of these issues on your baby.
Angie is very clear that it is not the role of a healthcare worker to advise you to end a pregnancy due to an issue identified in the baby, but on many occasions she hears of situations where an assumption is made that because a particular issue has been identified that the women/couple will inevitably want a termination.
If you are faced with this issue, please feel free to contact Angie to discuss your particular circumstances. She will work with you to clarify the issues, seeking additional expert advice as needed, so that you can make the decision which is right for you. Angie provides continuity of midwifery care packages for women who continue their pregnancy and for women who conclude that the loving decision is to end the pregnancy.
Can you help us get more detailed information about our baby’s condition?
If you wish, Angie can arrange for you to see Professor Basky Thilaganathan in Harley Street. Professor Thilaganathan is professor of fetal medicine at St Georges hospital in London and is able to provide expert diagnostic services.
Your NHS hospital may also be able to arrange referral to him or one of his colleagues at the St Georges fetal medicine unit or a similar unit. However, a private consultation ensures that you can meet him personally and allows extra time to discuss the findings. Angie is able to accompany you to such appointments if you wish.
I have been told that my baby’s condition is “not compatible with life” and that I should have an abortion. My religion does not allow this. What should I do?
Angie has broad experience in such situations and suggests an urgent meeting with you to discuss both the findings and your feelings/beliefs. You do not have to end the pregnancy. It may be right for you to “continue to term”. This means continuing until the natural end point of the pregnancy, and this may or may not be the usual 40 weeks.
One of the founding principles of Walking With You is to offer continuity of care in such situations, respecting that the time you will share with your baby will be short. We will work to help you cherish this time, and to bond with your baby, however short his or her life may be, respecting the gift of their life, their uniqueness and your beliefs.
Many people facing such situations feel uncertain about detailed faith teachings relevant to their circumstances. Angie is able to support you to clarify faith issues, involving relevant faith leaders at appropriate times. This has included involvement such as a priest being present at caesarean section when immediate baptism was thought to be necessary within moments of delivery.
Do you support termination of pregnancy?
Walking With You offers a non-directive, non-judgemental service. In some cases information available in pregnancy identifies that a baby is facing major issues which are likely to mean that his/her life is very short and/or very compromised. The availability of such information raises ethical and moral issues for both parents and health care workers. The core principle of midwifery is being “with woman” and Angie’s counselling training developed her commitment to providing care and support based on the beliefs and decisions of the woman/couple.
Angie works with clients to ensure that decisions are made based on the best quality information available. Sometimes there are additional tests which can give more information, sometimes a second opinion scan is valuable. Above all the need is to explore and clarify feelings and beliefs.
If you decide that termination of pregnancy is appropriate, and that your decision is based on understanding of the facts, Angie will gladly support you through the process and provide postnatal care for you.
I’m considering becoming pregnant, but I am very worried because both my sisters have had babies who have died. Can you help?
It is totally understandable that you are feeling worried. Angie would be very pleased to meet with you to help in this situation. It is important to clarify your family history and the circumstances of the losses, as well as the wider family history, after which it may be appropriate to arrange specific tests or meetings with experts in particular fields.
The hospital have told me that I am “low risk”, but I am still feeling worried about the pregnancy and if my baby will be ok. Do you only work with people with really major problems?
Walking With You offers advice, information and support to anyone concerned for their baby’s wellbeing. Angie offers an assessment package which might be useful for you. This includes reviewing your history and your family history, current test/scan results and your hopes and fears. Angie will provide you with information and work with you to develop a plan to address your concerns. You may like Angie to attend your next scan or consultant appointment with you and can ask her whatever questions are in your mind. This assessment package is priced at £875, but please feel free to email Angie so that you can have an initial free telephone consultation to see if this might be right for you.
Do I need the Harmony test?
In the UK, the NHS offers all pregnant women screening for common chromosomal conditions. The most frequently offered test is the combined test.
This will be reported as “low chance” or “higher chance”. A result indicating a chance of 1 in 150 or greater is categorised as “higher chance”. If you have a higher chance result the NHS will fund additional testing if you want it to find out with greater certainty.
The result is calculated taking into account the maternal age, hormone levels and the baby’s “nuchal translucency” (back of the neck) measurement.
The Harmony test is what is described as a non-invasive test (NIPT). Harmony is a trade name, there are many branded versions available, other well established versions include SAFE, Panorama, IONA and NIFTY. They all assess the chance of trisomy 21, 18 and 13. Some offer some additional features. These tests are much more specific and accurate than the standard tests for fetal trisomy such as the combined test. The decision about which branded test to use should be discussed in detail with someone with extensive knowledge and understanding of these tests. Although they are basically very similar, there are subtle differences between them. Paying more does not necessarily mean getting better quality information.
If you are considering having one of these tests you should have a full discussion about your particular circumstances, the reasons you are considering it, what the result might mean for you. Angie has met a great many women who have had this type of test but have not really understood the implications or the limitations. These tests cannot tell you that “everything is alright”. No test can do that. All they can do is tell you if it is very likely or very unlikely that your baby is affected by one of the conditions tested for.
Non-invasive tests are still screening tests. They give a “probably” answer, not a definite one.
Also consider how you would receive the result if it was not the reassuring answer you were hoping for. Angie has met many women who have been emailed a very high chance result late in the evening, with no explanation or support available. Angie gives the results to you personally and is therefore immediately available to answer any questions and to address any concerns that arise.
Angie offers this type of testing as an additional feature of an assessment and planning package.
The simple answer is that no-one needs these tests, but you may choose to have one. This may be following a high chance combined test, to get more information without having an invasive test such as CVS or amniocentesis. It may be in addition to a “low chance” combined test, because you want to have a more accurate result.
If I have midwifery care with you do I still need NHS care?
Walking With You offers a supplementary service. It does not replace NHS or private obstetrician led care.
If you baby has health needs, you need to be registered for care with an NHS hospital so that you and your baby can access all the necessary services. This is a requirement of any package of care provided by Angie. Please do discuss this with Angie if you have any concern about this or are uncertain how to arrange it.
As an NHS patient you will be offered care including midwifery checks, scans and blood tests. Angie recommends that you follow this regular care pathway in addition to any appointments with her, so that the NHS team are aware of your situation.
Angie provides clinical notes about consultations you have with her, and is able to attend NHS appointments with you if you wish.
We believe that our baby has Downs syndrome. We know that heart problems are commonly associated with Downs syndrome. How do we make sure that he gets the best start in life?
The key to getting the best start for your baby is to make sure that everyone is aware of the likely issues. This means careful multi-disciplinary working.
Angie always advises that a baby facing issues such as this should be born in a hospital. As your baby may need some additional support after birth, it may be necessary to consider a different hospital than you had originally intended. Angie can explain and advise about this.
The question suggests that you have had a high chance screening test result, but not a diagnostic test to confirm it. If you have had NIPT with a high chance result, it is almost certainly correct. The combined test is more likely to give a false positive result. Angie can provide NIPT if you wish. Invasive testing is the only way to confirm the diagnosis before birth. Many parents do not want this done, but Angie can help you arrange it if you wish.
If you have had a high chance NIPT or an invasive test which confirmed Downs syndrome, it is very sensible to have an expert assessment of baby’s heart during pregnancy. Although this cannot provide absolute certainty, most major cardiac issues will be identified. This enables planning for what interventions might be needed at or shortly after birth.
This may also influence the decision about the place of birth.
Angie has a great deal of experience in working with women/couples to develop a labour and birth management plan, which reflects your hopes and wishes as well as baby’s special requirements and medical recommendations.
It is likely to involve meeting with your obstetric consultant and specialists such as a neonatal or cardiac consultants. Angie can accompany you to these meetings to help negotiate what is best for you and your baby.
Can you deliver my baby?
At present my insurance does not cover me to be the one who actually delivers your baby. However, if you wish, I can usually attend you in labour and at the birth to provide support for you and advocacy for you and your baby.
I’m 46 but my hospital won’t do an amniocentesis. Surely I have a high chance that my baby has Downs syndrome?
Angie is often asked this question, because most people are aware that the chance of Down’s syndrome increases with maternal age. It is important to understand that if a donor egg has been used, it is the age of the donor which is relevant.
The NHS offers all women the combined test. The combined test, as it’s name suggests, combines several features to assess chance that a baby is affected by Down’s, Edward’s or Patau’s syndrome. One of the factors is maternal age, meaning that if the other parameters are identical, a woman of 46 will be calculated to have a much higher chance than a woman of 26.
The NHS bases the decision to offer additional tests (sometimes including amniocentesis) on the result of the combined test. Additional testing is offered to anyone with a chance of 1 in 150 or greater.
Angie is able to discuss this in detail with you, explaining the features in your result and how these can be interpreted. She is able to give you information about other types of investigation which you may want to consider. If appropriate she can arrange an invasive test for you.
Can you do a scan for me?
Walking With You is not an ultrasound service. Angie is not a sonographer but is able to arrange scans with a consultant in fetal medicine, if required.
Scans are often a very useful tool in pregnancy, but certainly do not tell us everything. NHS patients are routinely offered two scans, with specific purposes.
If features of concern are noted at these scans, additional investigations or further scans may be suggested and funded by the NHS.
Many people choose to pay for extra scans, but Angie believes that this should always be based on a clear decision about what you hope to gain from this. The reason for the scan can determine who should perform it – a sonographer or a fetal medicine consultant. There are a great many clinics offering scans and it is important to make sure that you are getting the service which is right for you and your baby. Angie will gladly provide information about this, but is also able to offer support and information taking a much broader view of your circumstances and concerns.
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.