Learning disability and pregnancy

Women we talked to with a learning disability described their maternity experiences that were sometimes different to other women. Some lived with their partners and child or children. One woman lived with her mother and her young son, while others had ‘signed’ their babies into the care of other family members or social services. Most of the women had involvement with social services and had mixed views about this. It could be seen as a useful form of support or something the mothers’ endured because they felt they had no choice.

Tina talked about proving social services wrong’s because she didn’st want her children going into care.

Age at interview 33

Gender Female

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Some women felt that they were treated differently by midwives and other professionals because they were disabled. As Tina said; ‘a lot of people within midwives and health visitors, they just look at you and they make assumptions’. Jen found that while the midwife was ‘really nice and supportive’ when she was pregnant, she didn’t explain anything to her. She said she checked the baby and said it was fine.

‘I presumed going to like a different hospital for being pregnant’ would be the same.

This different treatment could involve not being given enough information and accessibility to antenatal classes or not being given choices with regard to place of birth or mode of delivery. Jen said ‘we just felt like we were invisible really, you know, no need for us to even be there because they’d already made the decision [to have a caesarian]’. Tina looked at videos on Youtube and NHS but ‘was never told about any of it’. Amanda says she felt disrespected by staff when she was in hospital. One woman described feeling ‘really frightened’ on the day she gave birth because she didn’t know what was happening.

Amanda wishes the background to the safeguarding alert had been explained to her so she understood it better.

Age at interview 35

Gender Female

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Jen describes how she wasn’st told about parenting classes when she was pregnant.

Age at interview 30

Gender Female

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The midwives decided that Jen should have a caesarian and she feels she wasn’st listened to.

Age at interview 30

Gender Female

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Some women found their midwives very supportive, particularly when they were in labour. Amanda had support from Team Around the Family (TAF) when she was pregnant and for the first months of her daughter’s life. This worked very well for her and she was given easy read infor-mation which she found useful.

It was hard giving birth but the midwives encouraged Tina to push.

Age at interview 33

Gender Female

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Amanda met the Team Around the Family Team when she was a few months pregnant.

Age at interview 35

Gender Female

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Some of the mothers said it was clear that some health professionals were worried about their ability to care for their baby properly. This could be upsetting, particularly when they could see how other women were treated in hospital. Women described being misjudged and, as result, mis-treated. One woman was taken to a health clinic to get a contraceptive injection the day she left hospital. She thought this was ‘thoughtless and careless’ and ‘it goes to show that I don’t think they have any training really round people with learning disabilities’. Some women found it stressful and upsetting to be watched by midwives while they looked after their babies in hospital. Jen had to ring the bell to call the midwife before she did anything with her baby.

Midwives were told by social services to watch Jen look after her baby in hospital.

Age at interview 30

Gender Female

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Involvement by social services in their lives was a common experience for the women. This was seen as sometimes helpful, and sometimes irritating.

Clarissa has mixed views about social services but says ‘they give good tips’.

Jen says they just kept trying to force me into a mother and baby unit’s.

Age at interview 30

Gender Female

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Amanda describes when a midwife raised a safeguarding alert about her.

Age at interview 35

Gender Female

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The women who had their babies taken from them talked about how upsetting this was. One wom-an was not allowed to be discharged from hospital until she signed a document giving the care of her son to her mother-in-law. Another woman has not seen her daughter for two years as she had been taken to a different part of the country by her husband. Both women described feeling deeply distressed about this. Jen, whose child was two when we talked with her, said she ‘technically hadn’t had the experience to be a mum yet’.

Wasn’st allowed to take her child home

Age at interview 30

Gender Female

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Jen signed her baby into her husband’s parents care on her birthday.

Age at interview 30

Gender Female

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Jen forgot she was a mum when she wasn’st allowed to look after her son.

Age at interview 30

Gender Female

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One woman we talked to, who was still pregnant, was given a Real Care Baby to look after for three days. This gave her, and social services, feedback on how well she was able to look after a baby. Some women relied on the support of family and friends during their pregnancy and after giving birth. G took the information she was given round to a friends house to go through, while Stacey said she asked her mum or sister to explain it to her.

Stacey describes looking after a Real Care Baby

Age at interview 25

Gender Female

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G couldn’st understand some of the words in the information from the midwife but a friend explained it to her.

Age at interview 37

Gender Female

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Stacey uses Google to find information or asks the doctor to write things down so she can ask her family to help her to understand it.

Age at interview 25

Gender Female

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Some of the mothers had advice from midwives to help them provide more effective care. Most women thought that midwives need special training to better understand the maternity needs for women with learning disabilities.

More training in learning disability is needed so that people are not mistreated or misjudged.

Age at interview 30

Gender Female

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More training in learning disability is needed and then you’sll do fine, says Amanda.

Age at interview 35

Gender Female

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Just talk to me more about pregnancy, says Stacey.

Age at interview 25

Gender Female

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