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.
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 Direct 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.
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.
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.
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”.
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’.
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. Gtook the information she was given round to a friends house to go through, while Staceysaid she asked her mum or sister to explain it to her.
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.

Added to the site May 2017.


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