Impact of pre-eclampsia on children’s long-term health

Some people we talked to thought that their babies and children might have some ongoing health and developmental concerns. It was not always clear whether these were related to the mother having had pre-eclampsia or HELLP syndrome in her pregnancy or if this was an unrelated issue.
Several parents we spoke to were confident that there were no lasting effects from their illness on their child. Claire said her baby was where she should be developmentally and there has been no long-term impact: ‘she’s just a normal baby now’. Mairi said ‘it never once crossed my mind that there could be any effect on the baby’ and her doctors had always been clear that the ‘problem’ of pre-eclampsia was to do with her, not her son. She had a follow-up meeting with her hospital doctors some months after the birth and thought that it would be good if it had been clarified then if there are likely to be any long-term health impacts for the child.

Michael didn’st think there were any long-term health impacts for his son. However, Michael and his wife were facing the question of whether they will have more children in the future.

Age at interview 32

Gender Male

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Well for him, I don’st know, I look at him and I think that he just seems to be-, obviously I’sve got very biased views, but I think he’s so perfect and there are a couple of things that being born that early, he’s maybe a little bit different from a full term baby, but they’sre generally things that he’s either already outgrown or something that I feel he’sll outgrow anyway soon. So, I don’st sort of feel that it sort of restricted him in any ways. For Helen, it’s pre-eclampsia. So she, the professor that she went to see sort of advised her that she still has a reasonable risk of getting it for any second child that she might have, so that sort of is in the back of her mind trying to think of what that could mean. We probably always planned on wanting to have more than one child. And now, with that bit of information, we need to probably have a little think about whether we still want to or not.

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Samantha X found that some people have been reluctant to ask about her baby’s health, but that this is less of a problem now.

Age at interview 32

Gender Female

Age at diagnosis 31

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Sometimes people are a bit scared to ask how she is. In case I sort of come up with a long reel of, Well, she’s got this, this, this, and this. Whereas, you know, most people are sort of oh yes, baby’s fine. But its funny because I visited the people at work a few weeks after she born, after I’sd come out of hospital, and you know, there were a lot of people that sort of kept their head down and you know, weren’st quite sure what to say, but having now been back into my office again people seem very much sort of business as normal and certainly friends, you know, it has very much resolved itself. It doesn’st seem to be an issue any more.

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Others were concerned that their baby’s health or development had been impacted by their pre-eclampsia, because they had been born prematurely. Kay’s baby was born at 25 weeks and developed chronic lung disease. Her daughter was now aged four and Kay noticed that she sometimes ‘struggles to breathe, she tires easily, she doesn’t run around like other kids do’.
Check-ups on children’s health
Some babies had to have medical appointments at the hospital for some time after they were discharged. These appointments were not necessarily because the baby had known health problems, but were just for check-ups. Aileen had pre-eclampsia in both pregnancies. Her two children were born a year apart. She took each baby to a hospital clinic every three months until each child was two years old. Samantha X’s baby was prematurely born at 29 weeks and had some difficulties with feeding. She went to see the paediatric consultant more frequently, with 3 appointments in the last 6 months and expected those would continue for at least two years.
Sometimes these check-up appointments were reassuring for parents. However, some found it emotionally difficult to go back to the hospital where they and/or their baby had been very unwell. For Samantha X, taking her daughter back to hospital for the check-ups meant that ‘it all sort of comes flooding back and I think about it for days afterwards’.
Not everyone had follow-up appointments at hospital for their baby/child. Sometimes women felt comfortable with going to their GP if they had any concerns about their child’s health.

Tracey took her daughter for check-ups at the hospital. She felt a bit lost when these appointments stopped but also confident that her daughter is doing well.

Age at interview 39

Gender Female

Age at diagnosis 29

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They kept a really good eye on her. I went every every three months and then every six months until she was finally discharged. So, there was all sorts of things to look out for the eyes, the hearing so her senses really and her educational development. So, all sorts of things that they prepared you for that she’d be a lot slower. And she is; there’s a lot of things that I recognise as and I put it down to being premature but then other people wouldn’st bat an eyelid on it, but I know that there’s a lot of things through her well the first ten years of her life that I’ve put down to being premature. But no they expected her to be in hospital a lot just with a common cold, just with her immune system but and they were surprised that she never went in and that she was never poorly. So she, you know we’ve done really well actually, the after coming home bit and being discharged was a great feeling. But then you do feel a bit lost because you felt that they holding your hand along the way of her growing up and, you know her development which was really interesting yeah.

And how does it feel when that stops?

Oh I don’st like that; I really didn’st like that. But it is, you know as they explained it’s now, you know medically she’s absolutely fine and so now it’s down to the schools and the education system to keep an eye on her to make sure that she’s doing and being where she should be, which she has done, and actually you know rather well. So she’s, yeah a lot of a lot of her subjects she’s higher than her age, so she, you know she’s done brilliantly.

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Helen X’s baby was one of the healthiest babies on the Neonatal Intensive Care Unit (NICU). She was taking her son to a hospital check-up appointment soon but this was the first since he was discharged.

Age at interview 31

Gender Female

Age at diagnosis 31

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And he’s doing fine now?

Oh yes, he’s absolutely fine. As I say I think its luck really that he was as well as he was, and you know, there was obviously there was lots of other babies on the neonatal unit that we’sd be peeking at and all the rest of it, and I think, you know, we were just lucky that he was a reasonable size and that he came out with no real issues for now, which is great. Yes.

And how often do you have to go and have him check at the hospital?

They’sre really not very interested. I haven’st been back to the hospital with him at all. We’sre actually going tomorrow for the first time, which is, six weeks past his due date. And because we asked them about, you know, how often will you want to see him and things for planning our travels. And they were like, Well if he’s fine at six weeks really we’sre not really very interested. So… fine [laughs]. So yes, so he just has all these normal GP and health visitor stuff to hm.

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Health concerns for babies and children after pre-eclampsia

Some of the longer-term health concerns included:

Immune system and risk of infections

The immune systems of babies born prematurely are often not fully developed, meaning they are at higher risk of getting a serious infection. Kay was cautious, especially early on: ‘you can’t just go to [a supermarket]. I’m not taking my baby out to [a supermarket], there could be germs’. Added to this concern, she thought her daughter had not had all her immunisations because she was in hospital for so long and these would normally have been done at the GP surgery: ‘she got some injections; the hospital missed the next lot because, you know, she seemed to just be in no-man’s-land because she’d been in hospital so long’.

Kay became friends with some other women from a support group for families with premature babies. One woman in particular understood that meeting at a soft-play centre was not an option because of the risk of infection.

Age at interview 42

Gender Female

Age at diagnosis 38

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There’s ones who haven’st been through the very sick and very small, but there’s ones that have, and so it’s a good support network now and we meet up every so often, we have soft play. If we have aI mean when Imogen was small and I wanted to go to meetings I couldn’st do soft play because she would have she might have caught an infection so that was no go. But they held it in her house for me so there was a smaller amount of kids and that was brilliant. That’s the kind of support group you want because when I said to her, “You know I don’st really like” she knew why I didn’st want to go to soft play she knew that would be too dangerous. Why did she know? Because she’s been there.

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Breathing and digestion problems

Sometimes the breathing (respiratory) and digestive systems of premature babies are not very developed. Kay’s daughter had chronic lung disease and came home on oxygen after three months in hospital. Since then, ‘her lungs still aren’t very good; she tires easy’. Paige knew her daughter’s lungs were less developed and this, coupled with higher risk of infections, made her very concerned about chest infections; the doctors ‘expected her [my baby] to be in hospital a lot just with a common cold, just with her immune system’ but this has not been the case.

Cognitive and sensory development

Sometimes parents were told that premature babies may be later to do things (such as walk and talk) compared to babies the same age born at full-term. Sarah thought her baby was developmentally ‘behind’ for a while but has now ‘completely caught up’. A few parents thought their baby may have a ‘sensory processing disorder’. Josie wondered if this could be related to the fact that she wasn’t able to touch or hold her baby much when he was first born and needed looking after in Neonatal Intensive Care Unit (NICU). She had felt a lot of anxiety ‘about holding him because he was so small and attached to’ medical equipment.

Paige’s doctor told her not to worry if her daughter was a bit behind in terms of infant developmental milestones.

Age at interview 20

Gender Female

Age at diagnosis 19

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And developmentally wise, she’ll probably be behind until she’s two, but from seeing her growing up she’s not; she’s trying to walk; she was sitting up. Well, she was hitting all the milestones when she should have been but there was a lot of emphasis on her when we were discharged from the hospital. The consultant was like, “Don’st stress over if she’s not doing this; don’st stress if she’s not doing that.” So that helped a lot because, although for me it wasn’st really applicable because she was doing what she was doing, it was nice to know that there wasn’st anything wrong with her if it wasn’st, it was just the fact that you had to take at least [coughs] eight weeks off her certain milestones. So, say she’s meant to be sitting at six months old for her it would have been eight months old, and if she was nine or ten it didn’st really matter because she was just learning to do things in her own way.

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Josie’s son has had a few health problems with infections, his lungs and digestive system. It was recently been mentioned that he may have a sensory processing disorder.

Age at interview 45

Gender Female

Age at diagnosis 39

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And your son’s future health, have there been any conversations about his own future health?

No, no not really. You know because he was he, he was, and he is, pretty well. In his first year he had a few problems with quite unpleasant chest infections and things like that again and, you know that with the reflux was, you know generally thought to be issues of him having had it, you know an immature breathing system and immature digestion systems. But it wasn’st until very, you know really very recently when I’d I went to sort of enquire about the fact that he has a tendency to fall over a lot and, you know can be he’s a tendency to bang things and crash things you know, crash against things and things like that, that seem to kind of, you know be the behaviour of a younger child. That somebody suggested the sensory processing disorder, so you know again it felt that, no, nobody suggested that this might be an issue, and if it is an issue that’s connected to his prematurity and the pre-eclampsia, then nobody ever suggested that that might happen.

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Stephen, his wife and his mother-in-law had recently talked about their son being quite clumsy. He doesn’st think this is related to the circumstances of the pregnancy or birth though.

Age at interview 41

Gender Male

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And do you think about HELLP as something transient? So, it affected the pregnancy with sort of no long term complications.

Well it’s funny because we had a conversation the other week with Mairi’s mother and they were saying, “God, Alex is so clumsy, he’s all over the shop.”

You know he can fall over without even touching anything. And she said, “Do you think it could have anything to do with the, you know just the birth and the circumstances or anything like that?” I says, “No.” So, very much in my mind it’s something that happened; hasn’st had any long term consequences and was, as you say, transient in that sense. But who knows right, you know I mean I don’st think so but not if you don’st know, you don’st know, right?

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Appearance and size

A few women talked about their babies being quite small in size and weight. Paige thought her daughter was shorter than most of her peers who were born at full-term and also that she hasn’t lost any baby teeth yet. Kay sometimes had comments on her baby because ‘some days she honestly could audition for The Walking Dead [zombie television series], she’s so pale with purple, deep set eyes’.

Tracey found it difficult taking her baby daughter to weigh-ins because she was so much smaller than the other babies born at full-term.

Age at interview 39

Gender Female

Age at diagnosis 29

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When I take her in weekly to be weighed after I brought her home, that was quite horrific in itself because she was so tiny. You know you’re there in a roomful of mums with big fat bouncing babies and they’re all cooing over them and they’re looking at mine covered in strawberry naevus’s and she was so tiny and you just get remarks you know all the time of; What’s that on her face and why is she so small?, and actually the women who were weighing her knew nothing about premature babies; not even you know not so much the pre-eclampsia and the HELLP, but a premature baby; they had no idea how to deal with her or me.

And I was very teary; I was very I was finding it very hard to cope with but there was just nothing there. One said, you know, “You are quite teary; do you think you need some counselling?” and I kind and I did go for some but she was quite useless; it didn’st really work for me. But I gave it a go but you know that wasn’st happening.

So, you know and I really looked forward to weigh day, that I got quite obsessed with weigh day. The night before I’d be stuffing her full of rice pudding and stuff; that became very obsessive for me because you just want her to be like all the rest.

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However, it wasn’t always known whether their baby/child’s health problems were related or unrelated to their mother having had pre-eclampsia and/or being born prematurely. As Paige explained, ‘there’s a lot of things that I put down to being premature but then other people wouldn’t bat an eyelid on it’.
Parenting styles
Women often said that their experiences with pre-eclampsia have made them more anxious about the health of their children and of themselves (see also the section on lasting emotional impacts). Paige said she became very worried about health problems and is now more likely to seek medical help in case it is serious. She also has a lot of ‘anxiety’ being apart from her daughter and that this is becoming especially difficult ‘now that she’s doing more and more things. She’s into everything, she’s trying to walk, she’s playing with toys, she’s got her own little personality so leaving her to go into work is horrible because I don’t want to miss it’.
A few women thought though that their experiences had affected their approach to parenting in other ways too. Samantha X felt she and her husband are probably more relaxed parents because ‘every day we kind of think ‘oh my God, we’re so lucky she’s here’, because she so very nearly wasn’t’. She thought that worries about her baby’s health were likely to be quite normal and a ‘natural feeling for a new mother’ rather than solely related to her experiences of having had pre-eclampsia.

Kate didn’st feel she had become more anxious about her son’s health or being with him all the time. She had been aware though that her son may be at increased risk of Sudden Infant Death Syndrome (SIDS).

Age at interview 35

Gender Female

Age at diagnosis 34

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But I’sve been out with friends, and some people are amazed, you know. Is this the first time you’sve left the baby? No, no. Its fine. I’m not one of these clingy mums, you know, I don’st need to be with him every second of the day. I think it’s quite healthy for both of us that he sees other people as well [laughs]. I mean yes, I do have my moments of waking in the night and thinking is he okay? I’sll just go and check [laughs]. And now he’s started going through the night a bit longer, I think he hasn’st woken me up, is everything all right. Because it did occur to me, that because he was premature there’s a slightly higher risk of sudden infant death syndrome. Just because of being premature, being the weight he was when he was born. And it was at the back of my mind, you know. But I think he’s gone past that danger point.

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Because a family history of pre-eclampsia is a risk factor for future generations developing the condition in their own pregnancies, Paige was conscious of this for her daughter’s future: ‘if she ended up with pre-eclampsia, would she go through what I went through?’ Paige hoped though that her own experiences with pre-eclampsia would mean she would notice symptoms and there would be an opportunity to manage it sooner.

Women’s future health after pre-eclampsia

Some women we talked to had longer-term health issues and concerns related to their experience of having had pre-eclampsia or HELLP syndrome during their pregnancies....