Naomi Martson speaks with IFWIP team to discuss the importance of supporting parents with a diagnosis of fetal anomalies during pregnancy.
Naomi is a BACP and Infant Loss Certified Counsellor/ Psychotherapist from the UK.
Through her organisation, Lifecare Counselling, she provides professional independent counselling and specialist support for the parents after a miscarriage, diagnosis of fetal anomalies, stillbirth or death of a baby in the neonatal period.
With over 20 years’ experience of working in this field, she offers clients an impartial, supportive and a confidential service.
Research by the IFWIP team revealed the following:
1. The role of the Ultrasound scan around 20 weeks of pregnancy:
The use of Ultrasound scan around 20 weeks of pregnancy (sometimes referred to ‘Anomaly Scan’) has become a standard practice of care in the many parts of the world. (Ref 1)
One of the aims of this scan is to identify fetal anomalies (structural congenital birth defects).
2. What are the common fetal anomalies?
Amongst all the structural congenital anomalies, the most common is the congenital heart defect.
One in five of such heart conditions is diagnosed during pregnancy with ultrasound scanning. (Ref 2)
Amongst all the structural congenital anomalies, the most common is the congenital heart defect. One in five of such heart conditions is diagnosed during pregnancy with ultrasound scanning.
3. How prepared are the parents to deal with unexpected findings of fetal anomalies in the scan?
Many parents attend the scan appointment without the knowledge about this and therefore, often not well-prepared for any sudden and unexpected finding of a congenital fetal anomaly. (Ref 3)
As a result, when informed about the unexpected findings of fetal anomalies, parents could experience a ‘major life crisis’.
Moreover, in some situations, they are offered the option of termination (‘abortion’) of the pregnancy depending on the severity and the type of the condition. (Ref 4 & Ref 5)
On one hand, they have to gain knowledge about the congenital anomaly by going through (often complex) medical information and on the other, they have to make a difficult decision whether to continue or terminate the pregnancy. (Ref 6)
Therefore, it is not surprising that often the parents experience a high level of psychological distress during these challenging times.
4. Can this affect the psychological health of the fathers/ partners?
It often affects the fathers too. (Ref 7)
5. Sometimes parents have a make a difficult decision of termination of pregnancy due to fetal congenital anomalies. What impact could this have on their psychological health?
Sometimes when the parents have to make the difficult decision of termination of the pregnancy due to fetal anomalies, many of the parents could suffer from post-traumatic stress and depression. The symptoms could continue for several months after the termination/ abortion. (Ref 8)
Naomi explains the situation in more details:
“Diagnosis of a congenital anomaly during pregnancy can be a very challenging and traumatic time for the pregnant mother, partner, and the family.
For example, around 800,000 women in the UK become pregnant each year. More than 40,000 will be told there is a risk that their baby has a serious condition or abnormality at their 20-week pregnancy scan.
A high proportion of couples enter their 20-week scan, thinking this is where they find out the gender of their baby, often not realising what the purpose of the anomaly scan is for.
Often couples have not had the difficult conversation with each other about what would they do if their baby were diagnosed with a congenital or life threating condition prior to the ultrasound scan appointment.
As a result, this experience can lead to a great deal of anxiety and uncertainty when they receive the devastating news that their baby had a serious, life-limiting, or lethal condition or told that the outlook is very uncertain.”
Naomi explains how parents can be supported during this period:
“In such situations, parents need appropriate support.
Emotional support from family members and friends could be extremely valuable.
However, the support parents receive from friends and family is different from seeking professional support.
For example, we, at the Lifecare counselling, offer non-directive information and support to parents before, during and after antenatal screening; when parents discover their baby has an anomaly and have to make a decision about continuing with or ending a pregnancy.
Moreover, the support needs to be individualised according to their needs.
For example, when a baby has been diagnosed with an abnormality, parents may not wish to embark on counselling in the traditional way, they may need to make a decision soon and feel shocked, confused, scared and devastated.
We offer parents a confidential, one-off telephone or video support session where they will have time to explore feelings, talk through concerns, look at the options and support available, enabling parents to make an informed decision.
We believe that it is vital to provide a holistic service to all women and their partners after such a devastating experience of fetal anomaly, which is why we provide an open-ended service for subsequent pregnancies when women are likely to experience high anxiety’.
Naomi concludes as follows:
“Specialist counselling is rarely recommended and often is difficult to find even in the countries like the UK.
Even when searching on the British Association of Counsellors and Psychotherapists (BACP) ‘it’s good to talk’ website, or Counselling Directory, it is almost impossible to find a counsellor that specialises in supporting expectant parents through antenatal testing and decision making.
Therefore, more awareness and training is required in this area, both in the UK and also all around the world.”
Naomi could be contacted by:
1. Campbell S. A short history of sonography in obstetrics and gynaecology. Facts Views Vis ObGyn. 2013;5:213–229.[PMC free article]
3. Carlsson T, Mattsson E. Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: a qualitative study of males presented with a congenital heart defect in the fetus carried by their pregnant partner. BMC Pregnancy and Childbirth. 2018;18:26. doi:10.1186/s12884-017-1607-y.
7. Kaasen A, Helbig A, Malt UF, Naes T, Skari H, Haugen GN. Paternal psychological response after ultrasonographic detection of structural fetal anomalies with a comparison to maternal response: a cohort study. BMC Pregnancy Childbirth. 2013;13:147. doi: 10.1186/1471-2393-13-147.[PMC free article] [Cross Ref]
8. Korenromp MJ, GCML P-C, van den Bout J, EJH M, JAM H, CMA P, et al. A prospective study on parental coping 4 months after termination of pregnancy for fetal anomalies. Prenat Diagn. 2007;27:709–716. doi: 10.1002/pd.1763.