A-Z

Pre-eclampsia and high blood pressure in pregnancy

Baby’s health soon after birth

If a woman develops severe pre-eclampsia or HELLP syndrome, her baby may need to be born early if continuing the pregnancy becomes too risky. But delivering early can have serious impacts on the baby, as premature babies can have health problems as they have less time in the womb to fully develop. It is also thought that pre-eclampsia can sometimes cause babies to be smaller compared to their peers at the same gestation.
 
Some women we spoke to delivered early. Their gestation varied; Kay’s baby was 25 weeks old, Paige’s baby was 32 weeks, and Aileen’s babies were born at 30 and 34 weeks respectively. It wasn’t always clear whether the baby was going to live after birth. This was a fear for Kay who found it reassuring when doctors described her baby girl as a “fighter”. Munirah developed severe pre-eclampsia which caused her baby to have brain haemorrhages (bleeds inside the brain) and he was stillborn at 25 weeks. 
 
But not all of the babies of women we spoke to were born early, nor did all have health problems. Angela’s baby was born at full term (40 weeks). Mairi’s baby had no health problems and her doctors “were very clear that the problem was not with the baby; the problem the whole way through was with me”. Helen X’s baby had some problems establishing feeding but otherwise no major health concerns.
 

Claire described her baby’s health and how it improved over time.

View full profile
Age at interview: 39
Sex: Female
Age at diagnosis: 39
SHOW TEXT VERSION
PRINT TRANSCRIPT
So, she… we were very lucky. She was in the neonatal intensive care unit for less than 24 hours which, for a 34 week gestation, is fab. She was only on oxygen till 2pm the next day; so she was born at ten to midnight; by 2pm the next day she was off oxygen and breathing comfortably by herself. There was sepsis found marginally in the cord so she was treated on antibiotics as well.

But she was again only on two days; all her tests started coming back really positively. Jaundice, but again most newborn babies I think have jaundice. She needed minimal light therapy; she had the box under her clothes rather than the intensive sort of lights over her cot.

Feeding was her main issue. So she was tube fed. She was in SCBU (Special Care Baby Unit) for eighteen days and she was tube fed pretty much up till the day before we were discharged. I got to go into a transitional care ward with her for five days prior to her discharge and that was purely to get me used to looking after her; her used to me being her sole carer, and also to get the feeding down to pat. The doctors had decided that she needed one constant person to feed. So we started doing one bottle, one tube, two bottles, one tube, so on and so forth.

Until one day she did just take to it and the very next day we got home.

OK 

The doctors, when they were on their round, they'd come and be like, "We've only come to say hi, is she eating her bottle yet?" There was nothing physically wrong with her which again has been amazing. She was a great weight when she was born.

She was five pounds five.

Did drop down to four…to four and a half pounds within the week but we changed her formula then, she went on to premature formula which built her right back up.
 

Betty didn’t know for a long time whether her son was likely to survive or not. Living with this uncertainty was hard.

View full profile
Age at interview: 38
Sex: Female
Age at diagnosis: 37
SHOW TEXT VERSION
PRINT TRANSCRIPT
Because even then we didn’t know whether he would actually make it. I guess that would have been good in hindsight if someone could tell us what the chances of survival were.

All we heard I think was the fact that he was born at 32 weeks and so therefore he has a… the chances are good, but you don’t know what that means. And so I know my husband found it really hard to bond because, a) well they look like little aliens because they're so small and they don’t look like human beings in the traditional sense. They don’t look like babies, they look like little aliens and he was very scared to see him. And you know part of you is always thinking, 'Oh, well we don’t want to get too attached because he might not make it.' And maybe the chances were 95% but we didn’t know this, so maybe that’s something to consider.

Mm mm. And do you think percentages would have been useful for you or how would…?

Yeah definitely

Yeah

Because genuinely we had no idea whether he was going to make it or not. I'm sure the nurses knew but… and also, now in hindsight, I know that if it was more serious he wouldn’t have even been in special baby care, he would have been in neonatal intensive.

Yeah, yeah 

So, I guess the whole journey is an education in itself, and now looking back I've realised he was fortunate enough to have been born at 32 weeks and actually he was fine, but I didn’t know that at the time.
 

When she was diagnosed with severe pre-eclampsia, Munirah had scans to check on her unborn baby. The doctors explained that the situation was very serious and her baby was unlikely to survive birth.

View full profile
Age at interview: 27
Sex: Female
Age at diagnosis: 27
SHOW TEXT VERSION
PRINT TRANSCRIPT
It's not until I had the ultrasound scan later on that day, in kind of the afternoon/evening time, then I think it really set in that I've got a really sick baby and if he'd had a brain haemorrhage, that he really wasn’t going to make it.

[And the doctor] said, "When I've seen children in the past with this on their scans, they haven't made it. And if they do make it, they have cerebral palsy and it is a life-long disability. They won't get to live very old, and even if they do make it," and then he said, "The quality of life will be-, it just won't be great at all, if that’s what you’re going to want to know," and we did, we wanted him to base it on his experience of what he's seen. And that kind of-, you know you can read stuff about it and… but when you see someone who's doing this day in, day out. It was good to have someone's experience and I think that it kind of really helps you when you talk to people and say, "From my experience, this is what happened in the past and this is what is going to happen."

[The hospital] said, "You could…we couldn’t resuscitate him." They said, "We can't resuscitate babies under 500 grams," and he was under 500 grams. And they said, "There's a really slim chance he might make it through delivery and if he does he's not going to live for very long." 
Preparation and anticipation
 
Some women talked about trying to prepare themselves for the arrival of a premature and potentially ill baby. Women spoke about being frightened and worried. Sarah remembered “sobbing my heart out while they were trying to put this epidural in my back”. It could be hard to know what to expect and doctors could only talk about likelihoods until the baby was born.
 
Premature and unwell babies were looked after in neonatal units: a NICU (Neonatal Intensive Care Unit), a LNU (Local Neonatal Unit) or a SCBU (Special Care Baby Unit). Some women who had the chance to talk to a paediatrician or neonatal specialist found this very helpful. Kay also had a tour of her NICU beforehand. However, Josie said that nothing could have prepared her for the reality. Aileen is a neonatal nurse and so was aware that her baby had good chances of survival at 34 weeks but also knew the risks.
 

Knowing that an emergency caesarean section was very likely, Samantha X and her husband had the chance to talk with a paediatrician beforehand. She found this really helpful for explaining how her baby was going to be looked after when born.

View full profile
Age at interview: 32
Sex: Female
Age at diagnosis: 31
SHOW TEXT VERSION
PRINT TRANSCRIPT
They were very good actually. They, they told us about, you know, obviously they can’t speak in specifics until a baby’s born, but they, they gave us information about a baby born at 29 weeks gestation, you know, the main concern that we have is for the lungs. I’d had steroids already to already to address, you know, to certainly try and address that issue. They explained to us about some of the likely medication and machinery that, that you’d probably have to go on and you know, how they would sort of deal, deal with the baby in theatre and then take her away and that sort of thing. So, and actually that was really good, because when, I didn’t see her for quite a while, because they wouldn’t let me off of the delivery suite. But when my husband went upstairs and they were using terms like, ‘oh this is the CPAP machine’, he knew what that was and why they were using it. He already knew that and although it was still a big shock for him to see, you know, our daughter in that sort of situation, he did understand what everything was, and why it was there. So I’m really glad that we had someone come and speak to us actually, because, I would, I think otherwise I would have just been completely freaked out and you know, what’s going on, sort of thing. But because they’d talked to us about what you know, a baby at 29 weeks gestations is generally what their condition generally is, it wasn’t such a shock.
 

Kay appreciated learning more from a paediatrician who took the time to explain things clearly. However, it was frightening finding out about the survival rate of premature babies.

View full profile
Age at interview: 42
Sex: Female
Age at diagnosis: 38
SHOW TEXT VERSION
PRINT TRANSCRIPT
He answered any question I had. He explained to me things like our guts might not work right the hearts; it's not really a hole in the heart – the valve just doesn’t shut right – he explained to what all that was, and he explained it was very common; explained it might happen, told me not to worry; in time it might shut itself or if it is it's a little operation. I knew that anyway because my sister was premature herself and she… they didn’t detect it when she was a baby but about four years ago she had the operation herself so I kind of… I knew about it anyway. Any questions I had obviously like the shock of finding out, 'Wait a minute, they might not live.' I just assumed they all, over 24 weeks, would live. No, that’s not the case. And he explained the statistics; he went through the statistics – if she was born at 25 weeks, 26, 27 and 28. He went through, you know the survival rate.

And that meant a lot to me because it wasn’t a case of, "Och just take this baby out now I'm not feeling well." It was a, "This is your success rate if you could just hold on," and I was like, yeah. He was a [doctor’s name] …and a lovely, lovely man, it's so approachable. And it was… I didn’t feel… I didn’t feel rushed.

When he came to see me it wasn’t like, "Oh I've got to go," it wasn’t like that at all. He had time to sit in the ward and speak to me and answer any questions I may have. And he told things in a non-medical way if you know what I mean, he didn’t spit out garbled medical jargon at me; he actually spoke to me like a person so I would understand. And I have to say I found that in the hospital in general they were all like that. They didn’t bombard you with information you just went, "Pff don’t know."

They spoke to you in terms that you would understand and that made a big difference especially when you are looking at an area in your life you just never thought you'd be in and you just don’t know anything about it so…
Immediately after birth
 
Hearing a baby’s first cry was very emotional. Claire’s baby was born at 34 weeks and she had been advised by the paediatrician that she might not cry right away: “if I hadn’t been aware of that I think that would have freaked me out even more. She did cry, it was very weak, but at least it was a cry”. Josie remembered hearing her baby scream and then go quiet, which was frightening. Several women said their baby needed to be resuscitated after birth. Julie saw her baby being resuscitated which she found “horrific”.
 
Premature and poorly babies were quickly taken away to SCBU or NICU, so women did not always find out immediately after giving birth whether their baby was okay or get a chance to see and touch them. Kay didn’t know what sex baby she was having and her baby was taken away so quickly for medical checks; she had to ask a midwife if her baby was a boy or girl. Samantha X saw a “glimpse” of her baby on the way to SCBU, but was sad to have missed out on getting to hold her daughter. 
 
There were sometimes delays before mothers could see their babies again. These delays could be upsetting and affect how they felt about early bonding. Kate remembered being “worried about when I’d see him again, would he know me? Would he like me? Because I felt like I’d let him down”. You can read more about some of the emotional experiences here.
 

Sarah’s baby didn’t cry when he was first born and needed to be resuscitated.

View full profile
Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I remember when he was born and I couldn’t hear anything, and they took him away [clears throat] -because I’m, I was, I, you could feel the sensation of them pulling, pulling about my stomach. And after a couple of minutes - and obviously you don’t know what they’re doing down there - but I just remember saying, “I haven’t heard him cry.” And one of them just shouted, “Oh, don’t worry, he’s fine.” But they’d taken him off. He had to be revived. He was very blue.

So he’d already gone at that point?

He, well, he’d gone over to the other side of the room where they revive them, sort of there. And I said to my husband, “Look, just go over and check that he’s OK.” Because even then I couldn’t hear him crying, and it wasn’t, he was doing this like whimpering sound. It wasn’t a proper hearty cry, and it was just awful, it was awful. And then my husband went over, had a look at him, came back and he said, “Look, he’s fine, they’re just sort of getting him ventilated and everything now.” And then they, they brought him over. As they were walking out with him to take him, put him into the incubator, they just walked past me with him. And he looked - I sort of said, “Can I have a quick look?” and they just sort of put him down. I couldn’t hold him or anything, but they just showed me him, his head, and he, it was just this mass of black hair and it was just, it was wonderful. Most amazing thing ever. And then they took him off and. They took a photograph of him and they bring it up to you, because obviously I’d had a caesarean so I couldn’t go straight down.
 

It wasn’t explained to Lyndsey that her baby would be taken to SCBU. She expected him to be in her room when she came out of theatre after a caesarean section.

View full profile
Age at interview: 39
Sex: Female
Age at diagnosis: 34
SHOW TEXT VERSION
PRINT TRANSCRIPT
I thought he'd be there in the little cot when I got back, you know next to my bed because I think I'd been… been sewn up and they went off… he was off to the side and did he get wheel… I can't quite remember because, you know I was slightly away with the fairies after that point so I can't remember if he got wheeled out or I got wheeled out first but yeah he wasn’t there and no-one had told me that he was going there until I got back so. But my husband got to go and take a picture and I think we got a little Bliss card or something and so I got to see a picture of him at least so yeah.
Medical concerns and treatments
 
Not all the babies of the women we spoke to had health problems or needed treatments. But for those who did, the main medical ones were:
  • Breathing problems
Several babies had needed help breathing and were given CPAP (Continuous Positive Airway Pressure). This involves a mask or nasal prongs (small tubes) being fitted over the nose, which keeps blowing air and oxygen into the baby’s airways to help them breathe more easily. Aileen explained: “if you think about a balloon-, that when you first inflate a balloon it's very difficult to inflate. So, my baby's lung was like that; it's very difficult to inflate, so with the help of that pressure it stays open, his lungs stay open basically”. Sometimes oxygen was added to help the baby’s breathing a bit more. Paige’s baby had CPAP initially but only as a precaution. Sometimes babies needed help with breathing for longer and a few stayed on oxygen for a while after being discharged home.
 

Dominie explained CPAP and how this is different from being on a ventilator or intubated.

View full profile
Age at interview: 25
Sex: Female
Age at diagnosis: 24
SHOW TEXT VERSION
PRINT TRANSCRIPT
He needed CPAP.

And what's that?

So, that’s like pressurised air. So, they didn’t intubate him which is putting a tube down his throat. They kept oxygen under his nose.

Yeah

Which basically is like pressurised air to keep his lungs open. And they give him a bit of oxygen with it, so they're just assisting him with breathing, they're not doing it for him.

Yeah

So, they're doing a bit… so he had to have that; he had to be in an incubator. And he had to have some like drips, like I can't remember what it was called, but not food but as in like sugary…like a bit of like glucose and things yeah.
 

Kay’s baby daughter had chronic lung disease. The nurses helped explain what this meant and that her baby might be on oxygen when she left the hospital. Kay also had a book about premature babies, but there were some chapters she avoided.

View full profile
Age at interview: 42
Sex: Female
Age at diagnosis: 38
SHOW TEXT VERSION
PRINT TRANSCRIPT
I didn’t know what chronic lung disease was. At all. I didn’t even know my daughter had it. It came about in conversation because she'd had the infection and we weren't allowed her out for a cuddle, and I was very stressed, and her paediatrician consultant said to me, "Well it's just, you know we've got to take extra care because she's got chronic lung disease."

And I never said anything, and I come out and I said to her dad, "What's that?" And we'd been given a book, like a bible on having our prem baby. And it had all…it was from Bliss and it had all these conditions in it now. See I can't read that book. I don’t want to know, 'Oh my goodness this could happen.' I can't… I couldn’t deal with that. But when I found out what she had I went to that section of the book but I couldn’t read cerebral palsy. Well no I don’t want to know any of that.

I was never… I mean I didn’t sleep anyway but it would have been worse had I all that going through my head. And so I read about chronic lung disease and then I asked the nurse; I spoke to the nurse about it. I think nurses are more approachable maybe than consultants, and she certainly was. She watched Imogen most days when she worked so I asked her and she explained things to me very good. Because, you know when the consultant said you know, "She's got chronic lung disease and you may be… we're going to have to start thinking about preparing for her going on oxygen."

How are we doing that then? So, it was good that that was all… you know the nurse explained to me what all these things were going to be because I had no idea what that was. 
  • Feeding problems
Babies born early often have not yet developed the ability to suck milk from the breast or a bottle. Because of this, some babies were fed with a feeding tube. Some women were able to express breast milk which was given to their baby through a tube. Babies were usually able to move on to being breastfed or bottle-fed after a while, although not all women were able to establish breastfeeding or use their own milk because of their medications (see also the section on breastfeeding). Sarah’s son had problems with his digestive system, as well as feeding, and this meant he needed a gastrostomy tube into his stomach until he was nearly aged five. Nicola’s baby would stop breathing when feeding, which meant she needed to be tube-feeding for a while. Betty’s baby had reflux and vomited a lot. 
  • Body temperature regulation
To help keep premature babies warm, they were often placed in an incubator and/or had a heated mattress. This meant it was hard for parents to touch or hold their baby. Helen X and Kate’s sons were born a few weeks early and just needed to be kept warm for a few days. Sometimes parents were able to do ‘kangaroo care’ (which involves holding the baby inside their shirt or top with a lot of ‘skin-to-skin’ contact) if their baby was more stable and well enough.
 

Paige gave her baby ‘kangaroo care’ in SCBU to keep her baby warm as well as helping with bonding.

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 19
SHOW TEXT VERSION
PRINT TRANSCRIPT
Oh kangaroo care is the skin to skin. So, usually when they're in neo-natal and they're in intensive care they're just usually in a nappy. And then they encourage you to take… if you don’t feel comfortable but they encourage you to like put the baby down your top just…even for a full term baby skin to skin it's the very first thing they try to encourage, so they try to encourage it as much as they can, and they just seem to settle. They're meant to still be inside you so you're the only person they really know, then all of a sudden they're taken out their comfort zone; they're not with mum; they're put in this incubator – OK it warms them up but it's not really stimulating of their mum so when they're on you they just… they just seem to relax.

Mm mm. And did you feel that was very important for your bonding?

Yeah definitely. It's hard for it to bond through… I don’t know it's just… when you're on your clothes and you're cuddling her you just don’t seem to be close to her, but with kangaroo care then they're on you; you can feel them breathing; you can smell them and then they give you mirrors as well, which when they first handed me a mirror – like a little compact mirror – I was like, 'What's that all about?' But like you can't see their face; they're down here on you and then you hold the mirror and you get to actually to see them on you and that really helps because you can see to see how settled they are because when you're not holding them down they're quite fidgety; they're trying to get comfortable, whereas when you’ve got…they're on you they just seem to relax, just like fall asleep on you.
  • Jaundice
A common condition for babies is jaundice, which makes the skin and eyes yellow. It is caused by a build-up in the blood of bilirubin (a substance produced by the liver which is found in bile). In healthy newborns, jaundice often corrects by itself, especially as the baby gets older and their liver works better at processing the bilirubin. For premature or poorly babies, treatments are available. Betty, Ruth X and Lyndsey all remember their babies having light treatments to help.
  • Infections and risks
Premature babies have less developed immune systems and some medical interventions (like intravenous lines) increase their risks of picking up an infection. Sometimes antibiotics were given because the baby had symptoms of an infection, other times as a precaution. Paige’s baby had a thrush infection which became serious. Kay’s baby had a suspected MRSA infection when she was 10 days old. Olivia’s baby was monitored for 48 hours because she had tested positive for a bacteria called Group B streptococcus during her pregnancy.
 

Paige breastfed her baby initially and added vitamins to her formula milk to boost her baby’s immune system.

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 19
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well, with vitamins, iron and something else we had to put in there; it was three different things we had to put in there. And it was more so important for her than it was for a full-term baby. They said they still have to add it in, and I think the other thing that pushed it a lot is when they have breast milk your antibodies, they pick up your… they ingest your antibodies so they're more likely to fight off infection. So when you’ve got this tiny little baby that hasn’t got the immune system that it should have because it was born early, I think that’s another reason that pushes you for it because you think… you're just trying to do anything to make sure that baby's doesn’t have to end up back in hospital, because something as simple as a cold can send a prem baby back in and fighting for its life. So, I think you feel you have to, but then I also… when I had to stop I thought, 'No, she's had what she needed to and the most important thing is she has a happy mum and she's being fed; I don’t think she's worried about anything else.'
Some babies had other medical problems – some related to their pre-eclampsia, others unrelated. Sarah’s baby had septicaemia (a bacterial infection of the bloodstream) and scans showed he had had a bleed inside the brain at some point. In addition, her unborn baby had been diagnosed with a heart problem 21 weeks into the pregnancy and which would require surgery once born; although the heart condition was unrelated to pre-eclampsia, Sarah had worried the condition and being born prematurely might exacerbate health problems. Betty’s baby had high levels of insulin after birth, which eventually he outgrew. 
 
You can find out more about women’s experiences of their babies being looked after in neonatal units, such as SCBU and NICU, here.
donate
Previous Page
Next Page