Exploring the experiences of birth mothers whose children have been diagnosed with fetal alcohol spectrum disorders: a qualitative study

Robyn Thomas (Community Mental Health Team, South West London and St Georges Mental Health Trust, Wallington, UK)
Raja Mukherjee (FASD, Surrey and Borders Partnership NHS Foundation Trust, Leatherhead, UK)

Advances in Dual Diagnosis

ISSN: 1757-0972

Article publication date: 11 January 2019

Issue publication date: 28 February 2019

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Abstract

Purpose

Fetal alcohol spectrum disorder (FASD) is an umbrella term for a range of conditions that may occur in an individual whose mother drank alcohol during pregnancy. There has been little research into the experience of birth mothers of children with FASD and no published work of this kind in the UK. This is in contrast to a number of studies that have been conducted on foster/adoptive parents. In light of the recent publication in the UK of a mixed methods study on adoptive carers, it is timely to conduct research on birth mothers in the UK. The purpose of this paper is to explore the experiences of birth mothers following a diagnosis of FASD in their children.

Design/methodology/approach

An interpretive phenomenological analytical approach was used to generate themes from individual semi-structured interviews of five women who are birth mothers of children with FASD.

Findings

Four superordinate main themes and various subthemes were identified. To blame or not to blame captures the tension the mothers experience when considering the cause of their child’s condition. Life is a series of battles which describes the struggles the women experience on a crusade with a renewed sense of purpose that captures the process of transformation that occurs, which helps describe the internal and external factors that help the mothers cope.

Originality/value

FASD is often described in the literature as being completely preventable with the implication that it is the mother’s fault because they drank alcohol during pregnancy. However, a statement like this fails to portray the complexities of the phenomenon of women drinking during pregnancy. Life is difficult for the women for a number of different reasons, yet a sense of hope is present. The mothers have a renewed sense of purpose to do the best they can for their child and to raise awareness of FASD. Understanding their experiences can help service providers better meet the needs of parents and children affected by FASD.

Keywords

Citation

Thomas, R. and Mukherjee, R. (2019), "Exploring the experiences of birth mothers whose children have been diagnosed with fetal alcohol spectrum disorders: a qualitative study", Advances in Dual Diagnosis, Vol. 12 No. 1/2, pp. 27-35. https://doi.org/10.1108/ADD-10-2018-0014

Publisher

:

Emerald Publishing Limited

Copyright © 2019, Emerald Publishing Limited


Introduction

Fetal alcohol spectrum disorder (FASD) is an umbrella term for a range of conditions that may occur in an individual whose mother drank alcohol during pregnancy (BMA, 2016). The effects of these disorders may include physical, mental, behavioral and learning difficulties, often with lifelong implications (Warren and Foudin, 2001). Whilst other teratogens, including drugs such as opiates, are known to affect development during pregnancy, alcohol has been shown to cause the greatest longstanding harm (Behnke and Smith, 2013). Even when not admitted by an individual, a recent study demonstrated that over 15 percent of pregnant women throughout pregnancy will also use alcohol at high levels (Abernethy et al., 2018). As such, understanding the impacts of alcohol, as the most commonly consumed teratogen in pregnancy is essential in its own right (BMA, 2008; Popova et al., 2017).

The minimum level of alcohol exposure which will cause damage to the developing fetus is yet to be determined but there is likely to be a high level of individual variation. As alcohol exposure increases the risk of harm also increases (Mukherjee et al., 2017). The fetus is vulnerable to the effects of alcohol at all stages of pregnancy with different stages causing different patterns of harm (Gray et al., 2009). However, the aetiology from exposure risk to development of a disorder is not straightforward as evidenced by the fact that not all children born to mothers who have consumed large amounts of alcohol during pregnancy are affected (BMA, 2016). Other factors affecting fetal vulnerability have been implicated, for example, maternal nutrition (Dominique et al., 2012) as well as genetic variability between fetus and mother (Mukherjee et al., 2017). The uncertainty of identifiable risk therefore has implications related to possible perceptions of mothers who drink in pregnancy.

Research that has been conducted on the birth mothers of individuals with FASD has concentrated on identifying the characteristics of these women with the aim of identifying risk factors to facilitate prevention efforts. Some studies have suggested that birth mothers may come from the most impoverished and marginalized groups in society (Dominique et al., 2012). These studies have been conducted outside the UK, initially in South Africa and more recently in the USA. This raises questions about the applicability of the findings of such studies to wider international populations. In the UK for example, one sample of alcohol exposure in pregnancy identified that over 50 percent of those who continued to consume alcohol through pregnancy were university graduates (Nykjaer et al., 2014). Other limitations include the lack of control or comparison groups, and the fact that mothers were identified through clinics rather than through population-based surveillance, raising doubt about the representativeness of such samples.

Research exploring the experiences of birth mothers is sparse. Salmon (2008) explored the “lived” experiences of New Zealand birth mothers, from pregnancy onwards, of children diagnosed with FASD using in depth unstructured interviews. A number of themes emerged during the interviews which she broadly categorized into: the mother feeling at fault, a feeling of abandonment by the medical profession, feeling unsupported by the educational system and feeling blamed by the criminal justice system for criminal behavior by those affected by FASD (Salmon, 2008).

Wood looked at the experiences of being a birth mother in Canada since pregnancy (Woods et al., 2010). Wood conceptualized the data from the interviews into four themes – “living with the past,” “living with others,” “living with self” and “living with ambivalence.” Within these themes, guilt and blame featured prominently. A repeated theme was the difficult lives these mothers experienced before becoming pregnant with domestic abuse featuring highly (Woods et al., 2010).

It appears that no similar research has been done in the UK. The purpose of this study was to carry out exploratory research in the UK population. Whilst similarities might be expected there could also be differences reflecting different cultures, different health care systems and different guidelines and public health campaigns aimed at targeting drinking during pregnancy.

In light of a mixed methods study on adoptive carers in the UK (Mukherjee et al., 2013), it was considered timely to conduct research on birth mothers in the UK, in particular to explore the issues experienced by birth mothers which could potentially help shape the support services provided, both for the mothers and the individuals affected by FASD.

Method

Considering how little research is available on the experiences of birth mothers of children with FASD, a qualitative approach was chosen to allow exploration of the women’s experiences in detail. This study adopts an interpretative phenomenological analytical (IPA) approach as described by Smith (Smith et al., 2009). IPA was chosen because it offers a framework for studying lived experience which was the primary aim of the research study. IPA is influenced by phenomenology, hermeneutics and ideography. Phenomenology is the study of people’s perception (experience) of the world (as opposed to trying to learn what “really is” in the world) (Willis, 2007). Hermeneutics is the theory of interpretation, whilst ideography is concerned with the particular. This is in contrast to the nomothetic approach that predominates in psychology and is concerned with making claims at the group or population level (Smith et al., 2009). Ethical consideration for the study was obtained from NHS research ethics committee (REC reference 13/LO/0703). The research was conducted by an experienced psychiatrist familiar with an interview and phenomenological approach supervised by the lead clinician for the national FASD clinic.

Sample and recruitment

A purposive sampling approach was used which enabled cases to be selected based on, their characteristics of note, namely, being birth mothers of children diagnosed with FASD. Women were recruited from a national FASD clinic, which offers a specialist diagnostic service for children and adults with suspected FASD. All patients who attend the clinic sign informed consent to be contacted when possible research projects arise. Recruitment was also through indirect contact via the UK and European Birth Mothers Network, a support group for mothers who have had children affected by prenatal alcohol. They distributed recruitment letters approved by NHS ethical committee. For these mothers, diagnosis was obtained from a variety of sources including pediatricians and clinical genetic departments. There was no obligation to take part and women were required to self-select into the research. Each woman who contacted the research team and participated provided written consent in keeping with ethical agreements.

Women were required to be 18 years old or over; and to have given birth to a child diagnosed with FASD. The women were English speaking and currently residing in the UK and were willing and able to give informed consent. Women who were still drinking dependently, as defined by ICD10 and with unstable mental health problems were excluded from the study. In total, 12 women were contacted with information about the study of whom 5 participated. This number is in keeping with the IPA idiographic approach. It was not possible to identify why individuals refused to participate.

Data collection

Each participant was interviewed individually on one occasion. The interviews lasted between one and a half and two hours and followed a semi-structured format. The overarching question was “Please tell me about your experiences as a birth mother of a child with FASD.” The questions in the guide, approved by the ethics committee, were arrived by considering other research in this area, other carers’ research and the clinical practice of the lead researcher. The guide included secondary questions inviting the women to talk about their experiences before they became pregnant. The interviews were digitally audiotaped and transcribed verbatim by the lead researcher. The computer program N-Vivo (version 10) (Bazeley, 2009) was used to manage the data generated from the transcriptions.

Data analysis

The analysis proceeded in a number of stages. The first stage consisted of initial coding of the data followed by refining of categories. Analytical/dramaturgical analysis was then carried out (Saldana, 2013). Set building and modeling brought together the categories, themes and subthemes. Consent only allowed for anonymized thematic reporting and not identifiable case studies.

Results

Five women participated in the study, all of whom were white British in ethnic origin. All women had children with a confirmed diagnosis of FASD. The children varied in age from 10 to 29. The birth mothers varied in age from early 30s to late 50s. One of the women had two children with a confirmed diagnosis of FASD. One woman believed both her eldest and second eldest children were affected, although only the second eldest had received a definite diagnosis. Four out of the five women identified themselves as having an alcohol dependence disorder but who were now sober. The fifth woman acknowledged that she had been a harmful binge drinker in the past. Two of the mothers had children who spent some of their childhoods in care. The other mothers were bringing up their children themselves, often with considerable help from families and with input from social services.

Four major superordinate themes were identified: “to blame or not to blame?”; “life as a series of battles”; “on a crusade with a renewed sense of purpose” and “what helps?” Each of these major themes had subthemes, described in each section next.

To blame or not to blame?

Two opposing subthemes pervaded the women’s narratives about their children having FASD. Those beliefs were that, first, FASD is preventable and, second, FASD is “inevitable”:

In a sense if anyone was going to have a FAS baby it would have been someone like me simply because of the way […] Simply because of my history you could almost see it there waiting to happen.

(ID 1)

This “inevitability” is perceived to be the result of a number of circumstances, which are portrayed as being out of the women’s control. These circumstances include a family history of alcohol problems, a family history of mental illness, mental illness in the birth mothers and the fact that some of the women were victims of domestic violence. More subtly expressed is the implication that professionals are to blame because they lack knowledge of and skill in diagnosing FASD. There is also a lack of awareness in the general public about the dangers of drinking during pregnancy. The women report a lack of interventions offered to them during pregnancy.

This sense of inevitability is in contrast with the belief that FASD is a preventable condition:

Well in that J’s disorder is 100% preventable. If I hadn’t of drunk whilst I was pregnant he would not have FASD.

(ID 2)

There is a tension between the mothers feeling they were responsible for their child’s condition because they drank during pregnancy (which is viewed as a choice) vs their subjective reality that they were subject to circumstances beyond their control.

Life is a series of battles

Life is hard for the mothers and their children. This is conceptualized by two subthemes. First, as a series of battles which include battles distinct from FASD and, second, those directly related to it. These included battles against alcohol, getting a diagnosis, obtaining support for themselves and their child but also against their own sense of guilt.

Maintaining sobriety is precarious (especially initially) and not to be taken for granted. Each day of abstinence is a mini-victory:

I think I am still at a point where I’m putting one foot in front of another to get through every day.

(ID 2)

To begin with, there is the battle to get a diagnosis for their child. This begins with the realization that their child has problems followed by the long process of discovering the cause of these problems. Before a diagnosis of FASD is made, the child is often given multiple diagnoses. There is the frustration of not being listened to by health professionals which delays the child being properly diagnosed:

But of course I’m saying to everyone “he’s got FAS or ARND (Alcohol Related Neurodevelopmental Disorder).” It is because I drank and they were saying oh no don’t be silly. They just wouldn’t have it. They just would not accept it. But I kept insisting that is what it was and I kept giving them information.

(ID 1)

Obtaining a diagnosis is not easy. Professionals may be aware of the existence of FASD but not feel skilled enough to be able to make the diagnosis:

He said he couldn’t make the diagnosis. Umm but he knew the history as well so it was almost not a foregone conclusion but there was a high possibility that the difficulties J was having added to my a history, it kind of all added up to it.

(ID 2)

The relief experienced at arriving at a diagnosis can be short-lived because of the lack of support available for the child. Getting the support becomes the next battle. One mother was told very soon after birth that it was highly likely her child had FASD but, according to the mother, no further support or follow-up was offered. However, she did acknowledge that at the time she was not in a position to do anything constructively with the information, such as ask questions, because she was still drinking. This only came later when she had sobered up:

every bit of support he needs I feel I have to fight for.

(ID 2)

With the diagnosis comes the confirmation that the women’s drinking during pregnancy was responsible for their child’s problems. This results in all the women experiencing guilt and this is another battle they need to face:

Yeah horrible. Umm yes it was really hard. It is one think thinking yes this is what it is and another thing being told yes you’re the reason this is why your child is like this.

(ID 3)

The feedback I was getting from social services was that it was all my fault and in a sense it was my fault he had brain damage and no one knew that.

(ID 1)

The mothers have to cope with difficult behavior in their children.

One mother describes managing her child’s behavior as a relentless task which takes its toll. There is a need for great patience. The mothers have to deal with difficulties in the relationships with their children. When the child becomes aware of the association between their mother drinking during pregnancy and their difficulties, this can affect the relationship:

As time has gone on he’s got more and more angry at me and I don’t know why. There was a time when he said, “its ok I forgive you mum” I thought that won’t last for long (laughing).

(ID 4)

On a crusade with a renewed sense of purpose

The mothers encountered a series of battles which led to them championing a number of causes. As a result of their experiences of being a birth mother of a child with FASD, they have a renewed sense of purpose with two main subthemes. The first was to be the best advocate they can be for their child, and the second to help others avoid the same plight by increasing awareness of FASD in both professionals and the public:

I was determined I would get her all the help and support I could […] I started hunting round for support for help and everything like that which I’ve been doing ever since.

(ID 5)

I must admit once I’d got sober and dealt with the guilt and thought to myself you know what I can’t change what has happened but I can change what I do for her now and that is when I started hunting round for support for help and everything like that which I’ve been doing ever since.

(ID 4)

What helps?

The mothers developed methods to cope with life and the difficulties they are facing. The theme pervaded all their narratives. The theme is divided into two subthemes of external and internal factors. External factors which help include the support of the family, the faith of the birth mothers, social services, professionals who know about FASD, getting a diagnosis and support for drinking.

Internal factors related to dogged persistence to keep going and not give up. This perseverance is described as “plodding on.” This conjures up the sense of how difficult it is and how it is ongoing and long term. The women are courageous both generally and more specifically in terms of bringing it up with other women on an individual basis but also to talk more publically to others:

[…] just keeping going which isn’t a particularly fun existence but it is working at the moment.

(ID 2)

The mothers recognize the need for compassion for both themselves and their children. There is the realization that their children are suffering from brain damage as a consequence of their drinking. There is the awareness that in order to best help her child, the woman needs to look after herself and promote her own recovery. She needs to be kind to herself. She needs to have sufficient rest. She needs to be aware of and challenge her negative thoughts. She needs to be mindful of maintaining her sobriety.

The women are proactive – they do their own research and push for help from both health care professionals and the schools:

I basically made a huge pain in the arse of myself and pushed and pushed to understand what’s happening and what help he is getting and what else we could be doing.

(ID 2)

Whilst spending a lot of time talking about the problems their children experiences, all the women were very quick to point out the gifts their children have:

He’s lovely. He is a lovely, lovely boy. He has lots of talents.

(ID 3)

All of the women talk about feeling guilt. Guilt could be the undoing of the women causing them to seek solace in alcohol. But what emerged from the women’s stories is their ability to transform guilt into a positive force which drives them to help their children as much as they can. The women want to make it up to their children, but there is the realization that they will never be able to do this completely. However, the oldest mother I interviewed has reached a point of acceptance. She no longer has a need to make it right but accepts the situation as it is:

If all you’re doing is beating yourself up, you know so overcome by guilt, it isn’t actually helping anyone you know it’s done it happened. You’ve got to move on from that and do what you can to make it as good as you can.

(ID 1)

Discussion

Our study, whilst restricted by the numbers taking part and the background experiences of this group, despite ethical restrictions as to which group of birth mothers could be approached and what stem questions could be used, demonstrated the complexity of emotions and difficulties experienced by women who drunk heavily in pregnancy and affected their children.

There have been few published studies exploring the experiences of birth mothers of children with FASD. Salmon (2008) identified the theme “FASD is the Mother’s fault.” The issue of fault also emerged in this study and is captured by the theme “To blame or not to blame?” This highlights some of the tensions that exist when considering the cause of FASD.

In the literature, the point is repeatedly made that FASD is a preventable condition and that if women did not consume alcohol it would not occur. However, a simple statement like this in isolation fails to portray the complexities of the phenomenon of women drinking during pregnancy. When considering that recent studies showed that over 40 percent of women in the UK consumed alcohol in pregnancy (Popova et al., 2017), there is the risk that the social context in which prenatal exposure to alcohol occurred has been ignored. Further, any potential ameliorating or exacerbating factors are then overlooked. For prevention strategies to be successful, it is important that these are understood. Whilst the women acknowledge that ultimately they have a choice whether to drink or not, what is also implicit in their stories is the sense that the women experience a number of factors outside their control which make it very difficult for them to exercise this choice. Two of the women said that the only intervention which would have stopped them drinking during pregnancy would have been to “lock them up” which emphasizes the lack of control these women felt at the time. This is an intervention which is currently not possible in the UK. So there is a conflict in the women’s experience of the cause of their children’s FASD.

Some of the mothers referred to alcohol dependency as an illness, and made the point it runs in families. A family history of alcohol misuse is present in previous research with birth mothers. In her study of the lives of birth mothers in Alberta, Badry (2008) found that alcoholism in the women’s family of origin was an important part in the journey of “becoming” a birth mother.

Whether alcohol dependency is perceived as an illness or not will influence how responsible society holds these women and how responsible they consider themselves. The issue of responsibility is important because of the legal implications. An article in a British newspaper described a test case that appeared in front of the Court of Appeal in November 2014. This could have led to the prosecution of women who drink alcohol while pregnant. The case was dismissed as the fetus was not found to have rights before birth (Schiller, 2014). Mothers reported a lack of advice from professionals about the dangers of drinking during pregnancy, which echoes a lack of awareness in the general public. This raises the question of whether it is right to hold women responsible if they are not aware of the potential consequences.

The theme “Life is a series of battles” highlighted the difficulties the mothers and their children encounter. This finding is not surprising. The mother has to overcome her struggle with alcohol. She may also have to face other adverse circumstances such as domestic violence. This is a theme that Badry (2008) identifies, and two out of the five women in this study were victims of domestic violence. Getting a diagnosis in the first place is a particular challenge, in part due to ignorance in health professionals of the condition (Mukherjee et al., 2015). The confirmation of a diagnosis of FASD leads to strong emotions including guilt, relief, frustration, and validation that their child’s problems are not the result of bad parenting. However, it can also lead to false hope, given the limited specialist support available for those affected by FASD. Getting support for their child then becomes another battle the women have to face for their children. Children’s problems are varied and include behavioral problems and learning difficulties, and these take their toll on the mothers. These challenges are similar to those documented in other studies of adoptive/foster caregivers (Gardner, 2000).

Despite these difficulties, there is a sense of purpose and optimism in the women’s stories and we were struck by their resilience. These women have overcome their alcohol problems. They are determined to be the best advocates for their children and are very much involved in looking after them. All the mothers were quick to mention the gifts their children have. They are passionate about raising awareness of FASD in professionals and the public.

The process of transforming the guilt they experience into a positive motivating force struck me as being particularly important. Through studying experience, we can gain a better understanding of possible ways of supporting others in a similar situation. Learning how people help themselves is illuminating. Potentially, this could lead to further research aimed at developing people’s coping skills.

Strengths and limitations of the study

The research question aimed to explore the experiences of women who have given birth to children who have been diagnosed with FASD. Whilst there are many proponents of researching “experience,” particularly in the health sciences, there are also critics who warn that under-theorization of such studies can jeopardize the usefulness of the results. Silverman warns against neglecting how cultural forms of representation shape “experience.” For example, he suggests that what we think is most personal to us, e.g. “guilt” may be simply a culturally given way of understanding the world (Silverman, 2006). Kitzinger (2004) reminds us that interviews do not tell us directly about people’s experiences but instead offer indirect “representations” of those experiences. She says that the use of self-report data raises the important issue of the relationship between the “voices” of participants and the “experiences” they report (Kitzinger, 2004). This was not considered an issue for this study because in adopting a phenomenological approach it was not aiming to determine external reality. Rather it aimed to understand the meaning a conscious person has developed (Willis, 2007). The focus in IPA is on understanding from the perspective of the person or persons being studied as opposed to trying to learn what really is in the world.

Four out of the five women interviewed identified themselves as being an “alcoholic” and one identified herself as a “harmful binge drinker.” However, it is certainly not the case that all mothers of children with FASD are “alcoholics.” Unfortunately, it was not possible to recruit a mother who did not perceive herself to have a problem with alcohol. It would have been interesting to compare her experiences to the other women.

Even then, it may however only answer part of the question, as the sample does not include many other parts of the population that would have been interesting and useful to study. The recruitment challenge due to the limits to who could be approached and data analysis restriction due to the small sample size meant that, for this study at least, this limitation had to be accepted and acknowledged. Further questions such as the influence of substance abuse on parenting capacity, the emotional repose to seeking and obtaining a diagnosis are also not fully answered. The aim, as an initial exploratory study, was not to produce results that are generalizable to other populations but rather to highlight themes of interest that may lead to further research. In this regard, the study achieved its goals. The aim was not to obtain factually accurate accounts of past events but rather to facilitate the women making sense of their experiences which is in keeping with the IPA approach. This study excluded women who were still dependently drinking because this could have affected their ability to give informed consent and participate in the interviews. Such a group of women may have described very different experiences leading to the emergence of different themes. The sample was quite homogenous but this fits with the IPA approach because its purpose is not to produce generalizable results but rather to search for individual and contextualized understanding (Willis, 2007).

Research into this area remains in its infancy. Whilst to some extent, this paper sits in isolation from other areas that may overlap, such as mothers with poly substance abuse, due to the nature and frequency of alcohol consumption in pregnancy, this formed the focus on this occasion. This paper highlights a few of the reasons why women choose to drink whilst pregnant, yet many questions remain. The research therefore warrants further evaluation. For example, why did only five mothers take part? One hypothesis was that those who took part have resolved their grief compared to those who did not take part. We cannot be certain and this would need exploration. Also, as all the mothers in this study consumed larger amounts of alcohol, is there greater or less stigma when the level of consumption is lower? Our paper suggests that blaming mothers does not necessarily help. Therefore, understanding what may help becomes important. As grief appears to be core to the experience, should there be interventions to support and manage grief in these parents. These and other questions remain.

Conclusions

The themes that emerge in this study portray some of the challenges the mothers face. Particularly striking was the tension that exists for the women in considering the issue of blame. FASD is often described in the literature as a preventable disorder and this was a belief echoed by the women. On the one hand, the women describe drinking in terms of choice, yet what also emerge from the analysis are the women’s experiences of being victims of circumstances beyond their control.

Despite the difficulties the women face, the mothers make the best of a difficult situation which is reflected in their renewed sense of purpose to do the best they can for their child and to raise awareness. This research should help service providers better meet the needs of parents, reduce stigma and blame as well as make a difference to the children affected by FASD.

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Acknowledgements

The authors thank the UK and European Birth Mothers Network and the women who agreed to be part of this study.

Corresponding author

Raja Mukherjee can be contacted at: raja.mukherjee@sabp.nhs.uk

About the authors

Robyn Thomas is based at the Community Mental Health Team, South West London and St Georges Mental Health Trust, Wallington, UK.

Raja Mukherjee is based at the FASD, Surrey and Borders Partnership NHS Foundation Trust, Leatherhead, UK.