Receiving unexpected news in pregnancy about your baby’s development is extremely difficult. Most people start to picture their baby very early in pregnancy, imagining who that little person will be and what they will be like. If you then are given the news that your baby is not developing as expected it is a shock, and hard to accept. This news often comes after a scan or other test.
Many people start a pregnancy believing themselves to be healthy and so expecting that all will be well. If you are then categorised as “high risk” because of a blood test result, your age or some other factor this can be very confusing and cause a huge amount of worry for you. I have many calls from people trying to understand the “risk” label and what this might mean for them. A specific example if when a relatively low PAPP-A level is identified.
Sometimes, the difference is able to be confirmed immediately. For example, a baby whose skull has not formed fully, so leaving their brain partly exposed (anencephaly/ acrania/exencephaly) can be identified with certainty at the first trimester scan. Sadly, there is nothing that can be done to correct this and even if the pregnancy continues to full term the baby’s life after birth would be expected to be very short. In other cases a difference such a limb difference or a cleft lip will be seen on scan, issues which your baby can live with but will require extra care.
However, in most cases, at first the news will be tenatative – it seems that your baby may have some difference and additional investigations are suggested. These tests aim to confirm or rule out a possible difference. The most common situation is probably a “high chance” result from the combined test. For other people a concern may be raised about unusual movement, or unusual appearance of organs or limbs at the mid pregnancy scan. Many parents talk to me about the challenge of trying to remain optimistic whilst being realistic about possible serious consequences of such findings. Sometimes certainty can be gained quickly, but in other situations days or weeks are needed before further information can be give. Sometimes health professionals have to say that we simply do not know the significance of a finding or how it may or may not affect your baby’s life.
The language used can add to your distress or may feel prejudicial.
Fetal/ foetal is a term often used to describe an unborn baby. For some, referring to the baby as “the fetus” or even “the pregnancy” can be used as a way of emotionally distancing. However, for many people, whatever the stage of pregnancy, this is their baby and they can feel that reference to “the fetus” is disrespectful to their little one. I would encourage you to speak up if this applies to you. Tell the professionals that you want them to talk about your baby, using their name if you have already chosen one. Many of us choose a name for our baby early in pregnancy, if only a nickname.
“Fetal abnormality” is a catch-all term for anything outside the normal expectations. Some people feel that the term abnormality is inappropriate and should always be replaced by “difference”. This is particularly discussed in terms of chromosomal differences such as Downs syndrome, with some people feeling that the word “abnormality” belittles the individual it refers to.
“Anomoly” may be used in place of abnormality. It simply means something which is not as is normally expected.
Sometimes the unexpected news in pregnancy means that it is uncertain how your baby’s life may be. Sometimes a finding can simply be a variation of normal development, and have no long term consequences. Sometimes some aspects can be predicted. Sometimes there can be clarity that the outlook is very poor, and your baby may not survive pregnancy, or may only have a short life expectancy after birth.
When unexpected news in pregnancy leads to concern for a baby’s wellbeing and life expectations, your healthcare provider may raise the option of ending the pregnancy (termination or abortion). It is seen as best practice to make sure that people know that this option is available to them. Not everyone knows that pregnancy termination is legal and available in the UK. Not everyone feels able to ask if it isn’t suggested as an option by a healthcare worker. That does not mean that because it has been mentioned that it is what the healthcare worker thinks you should do. I have worked with a very wide range of situations over many years. I know that everyone’s lives and beliefs are different. I know that situations of this sort are very, very hard. I won’t tell you what to do, but I can be a sounding board and can explain things in a range of ways to enable you to understand often very complicated information.
If you want to understand a test or scan result, or to talk through your options, I offer an initial free of charge conversation. This can be followed by one-off consultations if required, or some people ask me to accompany them as they enact their decision – whether to continue or end the pregnancy. Please do talk to me if you would like extra care if you are continuing a pregnancy in the face of uncertainty. In cases of financial need I can sometimes offer very significant reductions on my usual fees.