The experience during pregnancy and motherhood in a woman with multiple sclerosis

Abstract

Introduction

Multiple sclerosis (MS) is a chronic and degenerative neurological disease that primarily affects women, especially at an early age. The disease does not affect fertility in these women, although hormonal changes influence the onset of flares. Furthermore, many treatments are teratogenic, so pregnancy is often discouraged due to the risks it may entail.

Objectives

The objective was to explore the experience of pregnancy and motherhood in a woman with MS, identifying the barriers and facilitators that influence this process.

Method

Using qualitative methodology, a semi-structured interview was conducted with a woman with MS who had a child in 2014. The interview was conducted at the Institut Guttmann in 2022. A previously prepared script was used with questions about aspects of pregnancy and motherhood. Transcription was performed using TrinT and analysis was performed using Atlas.ti.

Results

She made a free and consistent decision about her motherhood, despite the possibility of a new flare, which she experienced after the first month of pregnancy. The pregnancy was uncomplicated, with only weight gain and mobility difficulties. A planned delivery followed by a cesarean section under general anesthesia. She breastfed normally and without difficulty until the flare, which forced her to terminate the pregnancy. She received family support, even replacing activities she could do herself. She felt that she had missed out on motherhood. The use of home adaptations, prior planning of activities, and the use of wheelchair-adaptable electric devices (a handbike) were facilitators during motherhood.

Discussion and conclusions

Suffering from MS has significant implications for the desire to start a family, and also raises the possibility of disease exacerbation. Significant barriers were observed during baby care, with assistive devices, environmental adaptation, family support, and prior planning of the actions to be taken being considered facilitators.

Resumen

Introducción

La esclerosis múltiple (EM) es una enfermedad neurológica crónica y degenerativa que afecta en mayor grado a mujeres y principalmente en edades tempranas. La enfermedad no afecta a la fertilidad de estas mujeres, aunque los cambios hormonales influyen en la manifestación de brotes. Además, muchos de los tratamientos son teratógenos, por ello el embarazo se suele desaconsejar por los riesgos que puede conllevar.

Objetivos

El objetivo ha sido explorar la experiencia del embarazo y la maternidad de una mujer con EM, identificando las barreras y los facilitadores que influyen en este proceso.

Método

Mediante metodología cualitativa, se realiza entrevista semiestructurada a una mujer con EM que tuvo un hijo en 2014. La entrevista se realiza en el Institut Guttmann en 2022. Se utiliza un guion previamente elaborado con preguntas sobre aspectos del embarazo y maternidad. Se realiza transcripción con programa TrinT y análisis con ayuda del programa Atlas.ti.

Resultados

Decisión sobre su maternidad libre y consecuente, a pesar de la posibilidad de nuevo brote, que sufre tras el primer mes de maternidad. Embarazo sin complicaciones importantes, únicamente aumento de peso y dificultad en la movilidad. Parto programado y cesárea bajo anestesia general. Lactancia con normalidad y sin dificultades hasta que se produce brote, obligándole a finalizarla. Recibe ayuda familiar llegando a suplir actividades que ella puede realizar. Percibe la sensación de que se ha perdido su maternidad. El uso de adaptaciones en el hogar, la planificación previa de las actividades y uso de dispositivos eléctricos adaptables a la silla de ruedas (handibike), son facilitadores durante la maternidad.

Discusión y conclusiones

Padecer una EM tiene importantes implicaciones sobre el deseo de formar una familia, además con la posibilidad de exacerbación de la enfermedad. Se observan barreras importantes durante la realización de los cuidados del bebé, considerándose como facilitadores productos de apoyo, adaptación del entorno, soporte de familiares y la planificación previa de las acciones a realizar.

Introduction

Multiple sclerosis (MS) is a chronic, degenerative neurological disease characterised by demyelination. It has become increasingly prevalent in recent years.¹

MS mainly affects young adults between the ages of 20 and 40, and is the most common cause of disability in this group. It has a heterogeneous and variable clinical course and is three times more prevalent in women than in men.²

As the incidence is high in women of childbearing age,¹ the healthcare team must address many fertility- and conception-related issues to provide these women with answers and support when making these kinds of decisions in their lives.

In all cases, the patient's perspective and wishes must be taken into consideration. It is essential to provide preconception information and good family planning, explaining the possible risks to the mother and foetus, so that a joint treatment plan can be established.³

In general, pregnancy is associated with a marked decrease in disease activity, primarily during the third trimester.^2,3 The medication used to control MS is not usually compatible with pregnancy. This is why it is recommended that symptoms are adequately controlled prior to conception. In the case of patients who have had a flare-up during the previous year, it is recommended to continue treatment and postpone pregnancy until a stable period of 12 months has been achieved.⁴

With regard to childbirth, evidence shows that any type of delivery is possible, and therefore routine caesarean section would not be necessary.⁵ In addition, epidural anaesthesia can be administered for pain control, as it has not been found to have any impact on potential subsequent relapses of the disease.³

However, the first three months postpartum are considered a high-risk period for flare-ups and an increase in disease symptoms. All women at high risk of relapse during the postpartum period are recommended to resume their usual treatment after delivery.^3,4,6

There is limited information available on the safety of using pharmacological treatments during breastfeeding, as it has not been confirmed that many of the drugs pass into breast milk. For this reason, breastfeeding is not usually recommended while taking medication. The decision, therefore, to resume treatment is an important issue for women with MS, as they must discontinue therapy if they wish to breastfeed.^6,7

All of these factors mean that living with MS significantly impacts this type of decision-making. The main reasons for decisions relating to pregnancy are MS symptoms that could affect motherhood and the fear of disability worsening.⁸

Objectives

This study aims to highlight all aspects related to pregnancy and motherhood in women with MS.

The objective was to explore the experience of pregnancy and motherhood in women with MS, identifying the barriers and facilitators that influence this process.

Method

In order to meet the set objectives, a qualitative phenomenological methodology was employed, which enables a subjective observation of the participant's experiences and feelings.⁹

The participant was selected through purposive sampling and was a patient at the Institut Guttmann Neurorehabilitation Hospital. Inclusion criteria included a previous diagnosis of multiple sclerosis with associated clinical symptoms; being over 18 years of age; fluency in Spanish and/or Catalan; having been pregnant within the last ten years; and expressing a willingness to participate in the study after providing the necessary informed consent.

To obtain the information, it was decided to conduct a semi-structured interview using a customised script containing open-ended questions about issues related to pregnancy and motherhood (Table 1). The interview took place in March 2022 and lasted approximately 90 min. It was conducted by the study’s principal investigator in a private room at the Institut Guttmann Neurorehabilitation Hospital, which had been reserved in advance to ensure there would be no interruptions. Various strategies were implemented during the interview to establish a climate of trust. First, the principal investigator was introduced, and the objectives of the research study were explained in detail, addressing any concerns the participant may have had and ensuring the confidentiality of the information collected. With the participant's prior consent, the conversation was audio recorded. Active listening was employed throughout the interview to facilitate the expression of thoughts, feelings, and personal experiences, avoiding judgements and promoting a respectful environment.

Table 1.

Script of questions for the semi-structured interview.

Introductory questions	• How many children do you have? In what year were they born?• Do you remember what week of pregnancy they were born?• Was it a natural birth or a caesarean section?
Decision about motherhood	• How did you make the decision to become a mother?• How long did it take you to make the decision?• How do you think MS influenced this decision?• Did you have anyone you could turn to for guidance about motherhood and MS?• Did you feel sufficiently informed?• When you told the people around you about your decision, how did they react?
Pregnancy	• How did you experience pregnancy? (routines, preparations, etc.)• What changes did you experience in your body?• What concerns did you have at that time?• What information do you think you would have liked to have had at that time?• How did those close to you react when they found out you were pregnant?• And your wider circle?
Motherhood	• How did you experience becoming a mother?• What feelings did you have once your child was born? • How was the postpartum period?• What difficulties have you encountered during motherhood?• What do you think people think about someone with SCL having children?

MS: multiple sclerosis; SCL: spinal cord lesion.

The patients had previously signed an informed consent form containing all the written information about the proposed study. Participation was voluntary. The study was approved by the centre's Ethics Committee. Confidentiality was guaranteed at all times in accordance with current legislation, Organic Law 3/2018 of 5 December on the Protection of Personal Data and the guarantee of digital rights, and Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on Data Protection (GDPR).

The interview was transcribed from the recording with the help of the TrinT computer programme to extract information.

Qualitative analysis was performed using descriptive phenomenology. The steps followed were as follows: first, the transcribed interview was read and reread. The units of meaning relevant to the topics of interest for our study and according to the set objectives were then identified and classified into sub-topics. Finally, the sub-topics were grouped into different categories.¹⁰ The entire analysis was carried out with the help of the Atlas.ti programme (ALTAS.ti v22).

Results

The selected participant was a 38-year-old woman diagnosed with MS in 2005, who carried a pregnancy to term in 2014, at the age of 30. Prior to pregnancy, she had a slight gait disturbance that did not require the use of technical aids. It should be noted that at the time she decided to become a mother, she was undergoing immunomodulatory drug treatment to control the disease.

After analysing the interview transcript, different topics of interest were identified and grouped into the following categories: the decision to become pregnant influenced by MS, pregnancy involving physical limitations, caesarean delivery and complicated postpartum period, breastfeeding conditioned by her health, motherhood and dependency, family support and overprotection. Table 2 summarises the codes and sub-themes identified in the interview transcript. Each category is described below.

Table 2.

Codes and sub-themes identified in the interview transcript. The number of quotations and a quotation example for each sub-theme are also included.

N.° of quotations	Code	Sub-themes	Quotation example
7	Pregnancy decision influenced by MS	Desire to be a mother	''It was always on my mind, we’re going to have a baby.''
		Decision-making	''I made the decision. Because, you know, I’m risking my health, really, you know?''
		Information on the risks of pregnancy	''… I knew what I was getting myself into, because from the beginning, before I got pregnant, I had a visit with the doctor…''
		Medication	''… I told them I wanted to stop, because I was taking contraceptives, I wanted to stop the medication…''
4	Pregnancy with physical limitations	Pregnancy	''I felt great.''
		Pregnancy complications	''I couldn’t walk the same anymore because it was really hard for me. I started retaining a lot of fluid.''
		Technical aids	''The chair that the doctor prescribed for me, for going out shopping and so on.''
8	Delivery and postpartum period	Scheduled delivery	''They told me, your son… the day the baby was going to be born, I mean… they didn’t let me wait until I had contractions or wait until I was dilated.''
		Caesarean section	''They gave me a caesarean section because… Well, they didn’t explain it to me. ''
		Postpartum complications	''At that moment, I had that flare-up […] They would have been [the baby’s age]… maybe two or three months old. ''
3	Breastfeeding conditioned by her health	Breastfeeding	''Having become pregnant, I, the experience has to be… total, you know? […] I also want to… Live that experience.''
9	Motherhood and dependency	Handling the baby	''Which was perhaps most difficult for me, because of course, when the child is so small, you don’t want to hurt him, do you? Maybe taking out of the cot.''
		Bathing the baby	''I didn’t bathe him. I only bathed him once. ''
		Taking the baby for walks	''… baby carrier that I bought specifically to carry the baby. ''
		Overcoming difficulties	''When you have a difficulty, there comes a point where you can’t find a way to do it, you know? ''
		Anticipation	''I did everything my way and always stayed ahead of things, you know?''
		Technical aids	''I knew that if I bought the machine (handbike) I would be freer, right? Because, of course, I didn’t want people to push me around.''
11	Family support and overprotection	Family support	''It is true that at first my parents took care of the child.''
		Dependency	''They wouldn’t leave me alone. My father was constantly at my house.''
		Negative feelings	''I see myself as I am, and I have to shut up because they’re helping you, you know?''

Decision to become pregnant influenced by MS

After several years with her partner, the couple decided to have a baby. However, the weight of the decision fell mainly on her due to concerns about a possible flare-up of the disease and a consequent worsening of her condition. She said she felt well informed at all times about her condition and how pregnancy could affect her. This is why the weight of the decision fell on her, and she made it freely and consistently, despite the possibility of a new flare-up.

''It's true that the decision is made by both of us, but I made the decision. Because, you know, I'm really risking my health, you know?''

''It was the baby and the sclerosis, the issue of the sclerosis getting worse. Always thinking about getting worse, but not worse to the point of ending up in a wheelchair, of course.''

There was a lack of people in her community who could guide her in making her decision, with whom she could consult, ask questions, and share her fears, feelings, and experiences.

Pregnancy with physical limitations

Primarily she experienced occasional urinary incontinence, fluid retention, and weight gain of 16 kg. This made it difficult for her to move around, and therefore in the last months of her pregnancy she had to use a wheelchair for long distances.

''I felt really good during my pregnancy. Everything just stopped, you know?''

Despite this, she reported feeling very well during her pregnancy and had no major complications.

Caesarean section and complicated postpartum

The delivery took place at the tertiary referral general hospital, as scheduled, by caesarean section under general anaesthesia. The exact medical reasons for this decision are unknown. In the interview, she stated that she had not been well informed of the reason, but had passively accepted it. This caused her to develop negative feelings.

''And when they told me they would put me under general anaesthesia, deep down I breathed a sigh of relief about the injection, but then it's true that I did feel a bit uneasy because I thought that in the end I wouldn't be able to… in the end it wasn't going to be how I expected. You know? […] you wake up, you have the baby, but…''

It should be noted that during the postpartum period she had a significant flare-up that limited her mobility due to involvement of the lower extremities and balance, as well as involvement of the ocular nerve resulting in loss of vision. This required rehabilitation at our centre. In addition, signs of depression were detected and monitored by the neuropsychology department at our centre.

Breastfeeding conditioned by her health

After giving birth, the neurologist suggested restarting her medication due to the risk of an outbreak. Despite this, she decided that she wanted to breastfeed for at least a few months and postpone treatment.

''I had the option of giving birth to the baby and starting medication. But I decided that if I got pregnant, the experience had to be… complete, you know? [laughs] […] I also want to… live that experience.''

''…damn it, on top of everything else, I can’t even carry on with this milk thing, you know?''

As her health deteriorated, she had to stop breastfeeding in order to restart the necessary therapy.

Motherhood and dependency

Due to the flare-up and its clinical consequences, the care of the baby was relegated to her closest relatives, her partner and her parents, who took full responsibility for meeting all the baby's needs.

''… Of course, it's true that at first my parents took care of the child.''

''Bath time, I'm telling you, I didn't enjoy it. Because his father bathed him. My parents held the child and bathed him, you know. Bathing him and nothing else. But anyway. But only once, once and… that way.''

''What was perhaps most difficult for me, because obviously when your child is so small you don't want to hurt him, right? Maybe taking him out of his cot.''

Motherhood in situations of dependency is difficult, but she explained that to solve certain situations she applied her strategies and anticipated the actions she had to take based on her needs.

''When you have a difficulty, there comes a point where you figure out a way to do it, you know?''

Anticipation

''I prepared everything, you know? The wipes, the nappy, if I had to put cream on him, then the cream. I prepared everything. I organised everything myself, in my own way, and always anticipated things, you know? ''

''In my case, I have to study it, I study everything. You see, so I don't have to rely on anyone. I want to go places on my own.''

On the other hand, certain devices and support products can make life much easier for these patients and promote their independence. The participant gave the example of the handbike: a battery-powered electronic device that easily attaches to a wheelchair, motorising it and making manoeuvring easier and reducing the usual difficulties.

''I knew that if I bought the machine, I would be freer, right? Because, of course, I didn't want people to push me around.''

Family support and overprotection

In many cases, partners and close family members can become indispensable as they offer their time to perform tasks that the mother cannot do due to physical limitations. In this case, both her partner and her parents were willing and available to help, although there were instances of overprotection.

''I did notice that they [family members] took the child out. It was like… With you, it's like there are more complications, you know? […] Because it's true that when you go out with a pushchair, they have to push it. ''

''When the child was still at home before he started school, [his parents] very rarely left me alone with him.''

''You, you relax. Don't tire yourself out, I'll change him. But if I want to change him, let me change him. ''

''But, for example, the bottle was formula, right? Let me make the baby's bottle. Let me heat the water for the baby, let me do things, you know? ''

This made her feel frustrated and helpless. In addition, different situations of conflict arose, further aggravating her discomfort and depression.

''And on top of that, it makes me feel worse, because I'm seeing how I'm seeing myself and I have to shut up because they're helping you, you know? ''

Despite her life experience and the severe flare-up that significantly compromised her health, independence and quality of life, she considered the possibility of a second pregnancy. This was because, with the benefit of hindsight after 8 years, she would have done things differently.

''The outcome was bad, but… I would have had another one. […] If I don't have one, it's because I don't want to take any more risks. […] I wasn't able to enjoy the child as much as I would have liked, you know? ''

Discussion and conclusions

This study aimed to explore the experience of pregnancy and motherhood for women previously diagnosed with multiple sclerosis (MS), and to analyse the influence of this chronic disease on such a significant life event.

The neurodegenerative characteristics of MS can make decisions around motherhood difficult, affecting not only the woman herself, but also her partner and immediate family. For this reason, the decision is often discussed with other family members and, above all, with medical specialists.¹¹ The fear of clinical deterioration or the onset of a flare-up with significant and irreversible consequences that could compromise the woman's ability to care for her newborn are among the main factors influencing this decision.^12–14 In this context, it is crucial that the decision is made by the patient and her partner, with adequate professional support to help them plan the pregnancy and select the most clinically appropriate time.

The scientific literature indicates that MS-related symptoms tend to subside during pregnancy.¹² In this case, however, the participant experienced occasional urinary incontinence, fluid retention, and considerable weight gain during pregnancy, which led to her needing a wheelchair in the third trimester. Despite this, the participant had a positive subjective perception, feeling better than ever and not wanting the pregnancy to end due to her fear of a possible postpartum flare-up.

The delivery was by scheduled caesarean section under general anaesthesia. This contrasts with the literature, as no publications recommending this procedure have been found. The reasons why the medical team opted for this intervention are unclear, but it was probably due to the participant's medical condition and fear of an epidural.

Approximately one month after giving birth, the participant experienced a severe flare-up, forcing her to stop breastfeeding in order to prioritise her recovery and begin the recommended pharmacological treatment. It has been reported that there is a high risk of experiencing a flare-up or relapse during the postpartum period, mainly due to the interruption of immunomodulatory disease-modifying treatments, which have teratogenic effects and associated risks during pregnancy and breastfeeding.¹⁵ In this regard, it is essential that women with MS have the opportunity to make informed decisions about breastfeeding based on medical advice, their beliefs, personal priorities, and clinical situation.

The flare-up significantly affected her balance and ability to walk, limiting her ability to perform basic newborn care tasks such as bathing, changing nappies, and carrying her baby. These limitations are commonly described in situations of high dependency.^11,13 Consequently, her family members took on these tasks and provided essential support. However, there were also episodes of overprotection, which caused her frustration as she was prevented from performing tasks that she believed she could undertake independently. It is crucial that families are given guidance on how to provide support without unnecessarily infringing upon the autonomy of people with disabilities.¹⁶

There are support products that can increase independence during motherhood, in addition to the handbike and baby carrier, which are the aids that our participant used. However, she was unaware of the existence of other home adaptations that could have improved her experience of caring for her baby. Better healthcare support would have benefited her greatly, as it would have enabled her to identify her specific difficulties and seek personalised solutions. It should be noted that the support products she used are not subsidised, creating an additional barrier to motherhood for women with MS and disabilities.

If the participant had had role models or shared experiences with other women in the same situation, some of the limitations she perceived could have been mitigated. In this regard, patient communities are a valuable tool for sharing experiences and fears, and can help reduce feelings of isolation within the social community.

It would be very helpful to incorporate counselling on issues related to pregnancy, fertility and motherhood into the rehabilitation process. One of the main challenges for rehabilitation teams is developing a greater understanding of the specific problems and needs of women with MS at different stages of life, bearing in mind that motherhood may be an important part of their life plan.¹⁷

A key limitation of this study is the considerable memory bias introduced by the passage of time, with eight years having elapsed since the birth of the participant's child at the time of the interview. This time interval may have influenced her memory of certain processes and feelings, which may have changed or been forgotten over time. Similarly, the results could have been enriched by including a larger number of women with MS to provide a wider range of experiences. Nevertheless, the presented findings are considered relevant and useful.

Finally, it has not been possible to triangulate the information collected, since the patient's medical records do not include data relating to pregnancy or childbirth follow-up. This is because the follow-up was not carried out at Institut Guttmann's Neurorehabilitation Hospital.

In conclusion, MS significantly impacts the desire to start a family and motherhood. Adequate family planning is essential in order to select the best time for pregnancy, given the risk of exacerbation of the disease, which has significant emotional implications. The main barriers identified in this study occur during newborn care, particularly with activities such as bathing, nappy changing, and transportation. Furthermore, the pharmacological treatment of MS can affect the ability to breastfeed, creating an additional barrier. Various support products (such as baby carriers or handbikes), adequate home and environmental adaptation, proper support from close family members, and prior activity planning are identified as facilitators during motherhood. This study provides first-hand insight into the experiences of pregnancy and motherhood for women with MS and offers valuable information to improve healthcare protocols and pathways, reducing perceived barriers. However, further research with a larger sample population is needed to gain a deeper understanding of this reality and highlight the specific needs of these women.

Ethical considerations

To ensure rigorous qualitative research criteria were met, the principles of credibility, transferability, dependability, and confirmability were considered. The transcript was validated by the participant (member checking) to ensure the accuracy of the account. A detailed description of the participant's context and characteristics was provided to allow readers to assess the transferability of the results. The analysis was carried out systematically, with each step from coding to categorisation documented, and was reviewed by another researcher to ensure consistency of process. Additionally, the investigator maintained a reflective log to promote objectivity throughout the analysis process.