Different Needs, Same Love

Pregnancy and Postnatal Outcomes of Women with Intellectual Disability.

This article is co-written by Ayeshah Mateen Allahwala and Vaheshta Sethna.

Ayeshah Mateen Allahwala is a final year psychology student at the University of Karachi, passionate about mental health, human rights, and education. Beyond her studies, she volunteers with NGOs working with children from underserved communities and writes to make mental health knowledge accessible for all. In this blog, she draws on recent research to explore what pregnancy and life after birth are like for women with intellectual disabilities, and how care during and after pregnancy can be better tailored to support them.

Vaheshta Sethna is a Senior Lecturer in Family Perinatal Mental Health (Education) at the Social Genetic Developmental Psychiatry Centre, King’s College London. Her research focuses on the health and needs of families during pregnancy and the postnatal period. She is especially interested in how psychological and social risks, as well as sources of strength, shape a child’s development. Through her work she aims to guide more compassionate and effective support for vulnerable families and foster hope in their care journey. In this piece, she shares insights from her recent work into pregnancy and postnatal outcomes for women with intellectual disabilities and their babies.

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Photo by Aditya Romansa on Unsplash

The moment they meet the world, but it meets them differently

Surrounded by echoes of doctors, nurses, fluorescent lights beaming above, the clatter of medical equipment, a flurry of instructions, sensations, reassurance, overflowing emotions, she lays there as her body and mind are going through unimaginable things, an embodiment of strength, ready to give birth. She feels confused, senses judgement and thinks: “How will I be able to do this?”

Motherhood is often seen as a time of significant personal change, filled with both joy and challenges. These challenges can be even more pronounced for mothers with an intellectual disability.

What is intellectual disability?

Intellectual disability is a neurodevelopmental condition that affects brain development and functioning. It is a lifelong condition that begins before adulthood.

Globally, the prevalence of intellectual disability is estimated at 1–3%, with higher rates seen in low- and middle-income countries where access to early intervention and healthcare is limited.

According to an internationally recognised framework for diagnosis (i.e. the International Classification of Diseases, 11th Revision (ICD-11)), intellectual disability is referred to as a disorder of intellectual development. It is characterised by significantly reduced intellectual functioning and limitations in adaptive behaviours, such as communication, social participation, and independent living.

Individuals with an intellectual disability learn and understand things more slowly, and need extra help with daily activities throughout life. When preparing for motherhood, these challenges can turn a healthcare setting into a confusing maze of unfamiliar terms and decisions.

For women with an intellectual disability who become mothers, the experience of pregnancy and birth is profoundly shaped not just by their condition, but by how society and the healthcare system respond.

And yet, these women carry the same hopes, the same love.

Pregnancy & intellectual disability

When a woman with an intellectual disability becomes pregnant, she may encounter a distinct set of challenges that impact her physical health, emotional wellbeing, and ability to navigate the healthcare system. Having an intellectual disability often involves difficulties with comprehension, memory, communication, and decision-making; skills that are essential for engaging effectively with healthcare services.

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The Many Facets of Challenges

Women with an intellectual disability may face multiple barriers in accessing antenatal care (also called prenatal care), the medical support a woman receives during pregnancy to keep both her and her baby healthy. It includes regular check-ups, blood tests, ultrasound scans, advice on nutrition, and guidance on what to expect as the pregnancy progresses. These challenges include communication difficulties, fear of judgment or stigma, and a lack of tailored support. For example, medical advice may be delivered too quickly, in technical language, or without checking for understanding. This can leave women feeling vulnerable, not only medically but emotionally as well.

Some women with an intellectual disability have reported inadequate treatment by healthcare staff, including limited understanding of their needs, and insufficient support during pregnancy and childbirth. However, this is not universally observed, suggesting that while negative experiences are reported, they are shaped by differences in staff awareness, training, and healthcare system practices.

Therefore, inclusive perinatal care, i.e. care during pregnancy and after giving birth that is flexible, patient-centered, and communication-sensitive, is essential for supporting pregnant women with intellectual disability.

Research Evidence

A recent research study examined pregnancy and postnatal outcomes for women with an intellectual disability to shed light on maternal and infant health outcomes.

The authors used a systematic review study design - a type of scientific study that doesn’t collect new data, instead it is a careful and thorough way of looking at existing published evidence on a specific question to understand what the overall evidence shows.

In this case, the researchers identified previously published global studies, with the aim of finding out:

● The health risks women with an intellectual disability face during pregnancy

● Potential complications their babies experience.

Through this information, the study aims to provide a clearer, more reliable picture of the challenges- which will help point the way forward for better care.

The researchers screened 103 full-text articles and ultimately included 9 articles (encompassing data from 8 distinct cohorts) that fulfilled the study eligibility criteria (i.e. studies were only eligible if they focused on women with an intellectual disability, defined according to internationally recognised manuals used to identify and describe mental health conditions).

What did the authors report?

Women with an intellectual disability are more likely to experience health issues such as urinary tract infections in mid to late pregnancy, gestational hypertension (a condition characterised by high blood pressure that develops after the 20th week of pregnancy in a woman who did not previously have hypertension), and postpartum haemorrhage (heavy bleeding after birth). They are also more likely to experience postpartum haematoma, which is a collection of blood or internal bleeding that happens after childbirth.

Women with intellectual disabilities tend to stay longer in hospital after giving birth and are more likely to be discharged to somewhere other than home.

Additionally, their babies are more likely to be born premature, at less than 37 weeks gestational age, as opposed to full-term delivery at approximately 40 weeks.  Some babies may require extended neonatal care. Notably, the limited number of studies reviewed showed mixed results regarding the association between intellectual disability and outcomes such as birthweight, congenital conditions (health problems present from birth), Apgar scores (which assess a baby’s health right after birth), stillbirth, and neonatal death.

Importantly, the systematic review highlights significant gaps in robust, up-to-date data on this topic. The included studies were limited to high-income countries and the groups of women with intellectual disabilities were much smaller than the comparison groups without disabilities. This smaller sample size may have made it harder to detect rare outcomes, like stillbirth, and as a result, the patterns seen in the data weren’t strong enough to confidently say they weren’t due to chance. Finally, the study only looked at how children developed during their first year of life, indicating that any results related to later development or long-term outcomes weren’t included in the study.

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Why this Review is Significant

This study confirms the urgent need for larger more inclusive studies so we can better support women with intellectual disabilities who often face health inequalities and rely more on services. It provides empirical evidence advocating for change, urging policymakers and pushing for inclusive health strategies such as using simple, easy-to-understand information, providing extra time and support during appointments, and ensuring accessible and patient-centred maternity care – thus, empowering women to make informed decisions throughout pregnancy and childbirth.

Time to Change the Narrative

Ultimately, every mother hopes for a safe birth and a healthy baby. Women with intellectual disability share the same dreams, but the system often meets them differently. By listening more closely, adapting care and treating them with better understanding, healthcare providers can help rewrite this story - one where strength, love, and equity guide every birth.