Jen

Age at interview: 30

Brief Outline: Jen is diagnosed with cerebral palsy and learning disabilities. When she became pregnant she felt unsupported by the midwives and, after giving birth to her son, was not allowed to take him home. She signed guardianship to his grandparents and now has regular contact with him.

Background: Jen’s son is two years old and lives with his grandparents.

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When Jen became pregnant she was not told about parenting classes until the week before she gave birth. She was encouraged to go to the mother and baby unit but refused because she lived with her fiancé at the time. She felt unsupported by the midwives who talked as if she wasn’t there. She thinks this is because of her learning disabilities. She also was taken off her cerebral palsy medication which left her in severe pain. She was told to have planned caesarean and after her son was born, she spent one week in hospital being monitored while she and her husband looked after their baby. She said that things, like feeding her baby, that should have been proud moments were ruined by midwives watching her. 

Before she left hospital she was told she had to sign the baby over to her husband’s parents. They have looked after her son since although she now has regular contact with him. Jen feels very let down and can’t understand why they weren’t allowed to look after their son like all the other parents. She has made a complaint about her treatment with the support of an advocate.

Jen felt she was treated like a disabled person by the midwife and couldn’t wait for her pregnancy to end.

Didn’t get the information you wanted, what would have made your experience much better do you think?

Just not being treated like a disabled person because I just felt I was being treated like a disabled person, like, you know, because most women, they can go in and have a talk with the midwife and that but, even though the midwife was really nice and supportive, in a way, she didn’t really talk much to me about things. It’s like when like she checks to see if the baby is okay, she just goes, “Yep, the baby is fine.” And then that’s it. She didn’t like explain anything, so in a way, it’s put me off being pregnant again in in case, you know, just same same treatment.

[mm]

Because I just didn’t enjoy it at all. I couldn’t wait for it to finish.

Pregnancy was very painful for Jen and she felt unsupported.

Can you tell me how you found out you were pregnant?

Went to the doctors and he told us and because I remembered I was asked for my baclofen because I have to have my baclofen for my cerebral palsy and he wouldn’t let me have that. 

You wanted to have your bac?

I have to have baclofen.

Right.

For my cerebral palsy.

Right. 

And they wouldn’t let me have my baclofen. Until they did a test and they did a test and that’s how I found out.

Oh was it, what, they were worried that the medication, they were, they thought you might be pregnant.

Yeah, something to do with the medication. You can’t have baclofen when you’re pregnant.

Right.

So then I was left with back pain and leg pain and I asked to see a physiotherapist. I have a physiotherapist anyway with my cerebral palsy but they couldn’t treat me because it was due to being pregnant, not due to my actual cerebral palsy. So again, I went through the whole pregnancy being in pain and like I only have one physiotherapy session, when I was eight months, and all they did was tell me how to sit and stand. They didn’t give me another appointment. 

Jen thought she would receive the same treatment she received at her appointments for her cerebral palsy, but she didn’t.

I am surprised in a way because like I’ve got a learning disability and like cerebral palsy and like, when I go to my cerebral palsy hospital, I don’t get treated differently because I’ve got a learning disability. The receptionists are really friendly and helpful. If because I get nervous around new people when I go to the hospital, so if it’s a new person I’m seeing, I’ll ask them at reception who it is and they explain it to me and they point the person out to me when they like call me out and that. So I just presumed going to like a different hospital for being pregnant, they’d treat learning disability people exactly the same but it was a completely different story.

The midwife asked Jen if she was cold, she was shaking so much before her caesarian. She wasn’t told what was happening.

When they when they said to you had to have a planned caesarean.

Yeah.

And, obviously, you were upset about this, did they explain to you what would happen, what the steps would be?

No, I weren’t explained nothing but I saw someone about three days before I had the caesarean and they just went through a consent form really quickly and then I signed that but I didn’t understand what I was signing and then they said, “You have to take this tablet the day before.” And I said, “What’s that for?” And they didn’t explain what the tablet was for or the caesarean procedure or anything so I was just clueless.

Yeah. So can you remember how you felt the day before you were about to give birth then.

Really frightened and I was really frightened on the day as well. I was like, I mean I was that frightened, I was shaking that much and the midwife said, “Are you cold?” And I went, “No, I’m that scared, I’m shaking.” 

And what, did she try to reassure you at that point?

No, I didn’t have any reassurance or nothing I, I was just shaking all the way through the caesarean, you know. Before the caesarean and all the way through the caesarean I was just shaking really badly because I was that scared because I just didn’t know what was happening.

Jen describes how she wasn’t told about parenting classes when she was pregnant.

I didn’t have a very good experience, being pregnant. I didn’t really know anything about it at all. I wasn’t given any information from the midwives or anything about antenatal classes or parenting classes or anything, so I wasn’t really prepared for the pregnancy. And I didn’t really have enough help and support to help understand it.

Oh, so you got, so, when you got pregnant, did you go to your doctor?

Yeah, I went to the doctors and had a midwife assigned to me and I kept asking about classes and that and they wouldn’t let me know about any classes.

Did they say why they didn’t let you know?

No, eventually eventually, just said that there was a class but that was when I was eight months pregnant, so I went through a whole, that was a parenting class though, so I went through the whole pregnancy not really knowing what to do because I wasn’t getting information off the doctors or the midwives. 

Why do you think they didn’t give you any information?

Probably because like I’ve got a disability, they probably thought I wouldn’t understand it.

So how much did you, I mean if you, if the midwife didn’t give you information, how did you find out stuff?

So I didn’t. I just kept looking on the NHS website and that to like find out the information and that, like how to prepare for the birth, how to prepare for like when you have the baby and that, so most of my information just came from the NHS website just looking at the pregnancy facts on there. Yeah.

And was that quite accessible for you?

It’s like some of it was and it was hard to understand, some it was okay to like understand and see what was going on and I tried to have a look for classes myself but I couldn’t find any.

The midwives decided that Jen should have a caesarian and she feels she wasn’t listened to.

Well, in the end, they said, “Oh you have to have a planned caesarean.” And then my partner backed me up and, because he could see I was about to cry, when he said that. And then he said, “Well, why does she have to have that for, you know? She’s quite capable of having a natural birth.” He went, “Well, that’s what we’ve decided.” And they wouldn’t explain why. So I had to have a planned caesarean in the week before the due date and when I was told that, I was like, I just shut myself off from the world. I wouldn’t speak to anyone. So I was just really angry because I just thought so that’s what they wanted all along, you know. And then and then wouldn’t, when he was born, I only see him for four minutes, well, me and my partner only saw him for two minutes and they they took him and we didn’t see him for two hours. And we kept asking, “Where’s where’s he, where has he gone?” And the midwives wouldn’t tell us where they took him and so that distressed me a lot because I just didn’t know where my son was.

And then I think it was about two hours after, three hours after I had him, they brought him back to the ward and then they told us that he was in the special care ward because he needed his lungs looking at. And I asked them why they couldn’t just tell us that’s where they took and they just walked away. 

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

Did anyone sort of help you, did you get, did the midwives help you look after teach you how to look after a baby?

Yeah, well, they were told by social services they had to help us so again, we were being treated differently because every time he needed his nappy done or his bottle done, we weren’t allowed to do anything unless the midwife was supervising us. So that angered me because I was thinking why, why are we being treated differently for, you know, we’re quite capable of like learning how to look after our son without having being watching all the time.

And then they supervised you for that whole week, were you?

[mm]

Or did they ease off?

No, the whole week I was supervised. Every time he needed something and I couldn’t find the midwife, I had to press the, you know, the bell by the bed, I had to press that. I wasn’t allowed to do anything unless the midwife was there.

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

No, well, they were trying to get me into a mother and baby unit, you know, and again it’s going back onto not having any experience, not understanding, so oh, ‘you can’t cope looking after the baby’. ‘You won’t be able to understand how to look after it’ and, you know, ‘you can’t cope’ and all of that sort of thing. So again, it’s just, basically, people aren’t seeing past the learning disability. Okay. I’ve got a learning disability but there’s no reason for you to judge me on whether I can understand how to look after a baby or not when I’ve been asking for classes and asking for information for how and they just kept trying to force me into a mother and baby unit.

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

Yeah, well, I left hospital on my birthday and well, on the Monday, I remember it was a Monday because that that’s my worst birthday ever, so on the Monday we had we had the meeting with social services, one of the midwives, I think it was the head midwife, and my husband and his parents. And nothing was said about having to sign my son over to his parents or nothing. They were just discussing how we were coping in the hospital. 

And what the midwife, she was aware of us bringing him home and then, on the day I was being discharged on my birthday, we were asked to go into the office and the social worker was there and we didn’t even know the social worker was coming and he said, “The only way you’re going to be able to be discharged is if you sign him into your husband’s parent’s care.” So that was my worst birthday ever. I don’t like my birthday now because just feels as though I was forced to sign my son away and I feel guilty about it, in a way, because like I didn’t have the courage to like stand up for anything because so much happened, I was confused about everything.

Jen forgot she was a mum when she wasn’t allowed to look after her son.

Can you, you’d given birth, you’d had your baby, can you remember what it felt like to be a mum in that week?

I can’t, no, because I technically I haven’t yet had the experience to be a mum. I mean now that that I’m living away from like my husband and his parents, and I and I see my son and have regular contact, I’m starting to feel like a mum but, in the past, I kept forgetting I was a mum because I wasn’t able to do anything with him. Like as soon as soon as he was out of the hospital, I wasn’t allowed to change him, I wasn’t allowed to do feeding, dress him, take him outside. All the normal mum things, I wasn’t allowed to do. So I just kept forgetting I was a mum because I couldn’t look after my son.

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

I think I think midwives should be trained in how to deal with people with learning disabilities because I just feel as though, when someone hears the word disabled or learning disability, people don’t understand what it is and just think you’re stupid or label you and, you know, just treat you as though you don’t exist. So I’d like people to be more aware and learn and train about what a learning disability is so we don’t get mistreated and misjudged.