A-Z

Kay

Age at interview: 42
Age at diagnosis: 38
Brief Outline: I was diagnosed with pre-eclampsia 5 months (25 weeks) into my second pregnancy. I was kept in hospital and, whilst there, ended up in Intensive Care three times. My baby, Imogen, was born by emergency c-section. She stayed in NICU (Neonatal Intensive Care Unit) and spent three months in hospital.
Background: My name is Kay, I am 42 years old and a bus driver. I have two daughters, aged 18 and 4. I identify as White British.

More about me...

High blood pressure problems developing

I was diagnosed with pre-eclampsia 5 months (25 weeks) into my second pregnancy. The first sign was probably my ankles swelling three weeks earlier, but I thought this was because I had been on a flight recently. I started to feel overheated and had cold-like symptoms. Due to a mix up with dates, I had the anomaly scan (usually at 20 weeks) when I was 25 weeks into my pregnancy. This appointment showed that I had high blood pressure and high levels of protein in the urine. My midwife contacted the hospital and I was told to go to my GP surgery the next day for re-testing. When the measurements were taken next day, I was immediately sent to hospital so they could monitor me. I was given some tablets to reduce my blood pressure before being sent home and told to return the next day for more checks. I was told the next day that it was now pre-eclampsia and so I would have to stay in hospital. I wasn’t keen on this, especially because I felt fine except for the cold-like symptoms. My partner persuaded me it was for the best that I stay in hospital.

Becoming more unwell

During my stay in hospital, I started to feel very unwell. The situation went from bad to worse as I started to have other symptoms. I felt sick and faint; I had blurry vision, swelling on my face, back pain and some nosebleeds. I felt overheated all the time, which I later found out was because of problems with my kidneys from pre-eclampsia. I was rushed into Intensive Care on three separate occasions. I was becoming very ill and my doctors told her me I would need to deliver my baby soon, but I was in denial and struggled to believe it was true. I was 6 months (27 weeks) into my pregnancy and so my due date was still months away. I had a look around NICU (Neonatal Intensive Care Unit) – the size of the incubators were shocking, but it was also reassuring to see that the facility and medical staff were set up ready to take care of Imogen as soon as she was born.

Giving birth and health impacts

I had no fight left in me by the time I was taken to Intensive Care for the third time. I was told that I would need an emergency c-section. This went ahead but we weren’t told much about what was happening. My partner and I were unsure if our daughter had survived the birth until a nurse told us she had been taken to NICU. Imogen was 1lb 8oz at birth. She was very poorly, had breathing problems and was at high risk of infection. It was 10 days before I could cuddle her for the first time. I discharged myself four days after giving birth as I needed to get back to normality – I hoped it would mean that everything was going to be okay. Imogen stayed in hospital for three months and I visited her every day, although I was still very unwell myself. I continued to have check-ups and took blood pressure medicine. 

I have some lasting damage to my kidneys and often get tired quite easily. I found out that I now have low levels of iron in my blood and so I can’t be a blood donor. This really upset me because Imogen had needed blood transfusions to live, as do many other premature babies. The whole experience left me with post-traumatic stress disorder and I feel guilty about what had happened to my baby as a result of pre-eclampsia. My oldest daughter was also very upset – it had been incredibly frightening for her as she didn’t know if she would lose both her mum and unborn baby sister.

Receiving support

The medical staff who looked after me and Imogen were great. I felt safe under their care and I really trusted the consultant I saw. Although this consultant has quite a direct tone, I appreciated his honesty and he went out of his way to offer me reassurance at the times when I needed it the most. I knew there was a support group at my hospital for families who had premature babies. I didn’t want to be involved at first though. I was worried all the other parents attending would have their babies with them whilst mine was still very ill in NICU. I eventually became close friends with another of the support group members – she had also had pre-eclampsia and so she understood what I had been through. At the time, I felt I couldn’t open up to anyone about what was happening. I put on a brave face but now think I should have talked more about how much it was affecting me.
 

Kay’s sister had developed pre-eclampsia 37 weeks into the pregnancy. It seemed to have no major impacts, so Kay wasn’t aware of how serious it could be.

Kay’s sister had developed pre-eclampsia 37 weeks into the pregnancy. It seemed to have no major impacts, so Kay wasn’t aware of how serious it could be.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I didn’t realise it was life threatening. I'd heard lots of people…my sister had had pre-eclampsia at like 37 weeks, 36 weeks and you know they put her on blood pressure medication and they took the baby out – ta da.

And I didn’t know, one, that you can get it as early…because they think obviously it started at twenty two weeks when my ankles swelled up. I didn’t know you could get it that early.

And I simply didn’t know it could take my life and I could lose my baby. I wasn’t aware of any of that because with my first pregnancy I had never experienced that. In fact up until then I didn’t know anybody who'd experienced pre-eclampsia so early; I didn’t even know our local hospital, which is seven miles from me, had a special baby care unit because I hadn’t need to know that. So it was all quite frightening. 
 

Kay felt underprepared when she developed pre-eclampsia. She remembered it being briefly discussed in a book but felt this didn’t give enough insight.

Kay felt underprepared when she developed pre-eclampsia. She remembered it being briefly discussed in a book but felt this didn’t give enough insight.

SHOW TEXT VERSION
PRINT TRANSCRIPT
You're just confused, helpless in a way because I didn’t know anything about the condition. So, confused because I didn’t realise it could happen at so early, and you just think, 'That can't be right, you know I've never heard of that happening to anybody.' And I think even when you're pregnant you're never given much information on pre-eclampsia. It's sort of skimmed over [laughs]. Whoosh here's a page of a book. I had this pregnancy book, I can't even remember what it was, and it had a wee section on pre-eclampsia, and it certainly didn’t tell me anything that happened to me so it kind of sugar-coated it a bit where that’s actually… and it definitely didn’t mention you can get it so early.

The pregnancy books are really designed for the third trimester pre-eclampsia which is where it mainly occurs. So yeah, it was very confusing and very, very frightening.
 

Kay went into hospital for checks on her blood pressure. She was told that she was very ill with pre-eclampsia, but she felt fine at that point.

Kay went into hospital for checks on her blood pressure. She was told that she was very ill with pre-eclampsia, but she felt fine at that point.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Over the next three weeks, when I went back to hospital the next day they kept me in. And I said then, you know, "Why are you keeping me in now?" and they were like, "Well it's pre-eclampsia." I said, "But yesterday you said it wasn’t pre-eclampsia and you let me go home."

And they're like, "Well it's definitely pre-eclampsia and we think you should stay in hospital," which I wasn’t keen on, and the doctor said to my partner, "If that, if that was my wife I wouldn’t let her go home." So he made me stay. 

And at this point it was really surreal because I felt fine.

I just felt like I had a cold; I didn’t feel ill. So, they put me upstairs on a ward with four other girls and again I was feeling really hot and the midwives came round and they were like, "No, you're really ill." "Mm, well I don’t feel it." They're like, "Look you're the illest woman we've got in here." "Mm, don’t think so," because I did genuinely feel OK.
 

Kay had Doppler checks and ultrasounds. It was very worrying that her unborn baby was so small, but she found some comments made by her consultant reassuring.

Kay had Doppler checks and ultrasounds. It was very worrying that her unborn baby was so small, but she found some comments made by her consultant reassuring.

SHOW TEXT VERSION
PRINT TRANSCRIPT
And they do a lot of other scans with you where they measure the blood flow through the placenta, and my consultant told me, "Your baby is going to be very small." He knew that you know. And I said to him, "I'm worried, you know she's going to be this small," and obviously as time went on I knew I wasn’t going to go forever, I knew it. And he said to me the sweetest thing, he said, "Don’t worry about her size because the ones that are bigger they're lazy and they come out and everything's fine, but they're lazy. But your little one's in there now and she knows things aren't right, and that baby's getting ready for a fight. She knows she's coming out for a fight." And I was like, "Really?" And again I don’t know if that’s true or not but it did make me feel better, and he was right. She came out and she hit the ground, well bang, and she was fighting; she was pulling tubes out, the ventilator came out. She was sedated to calm her down do you know what I mean? So, maybe that is the truth.
 

For Kay, seeing the neonatal unit helped her come to terms with the situation. It was still a huge shock but she also found it reassuring that there was an incubator and neonatal nurses ready to look after her baby.

For Kay, seeing the neonatal unit helped her come to terms with the situation. It was still a huge shock but she also found it reassuring that there was an incubator and neonatal nurses ready to look after her baby.

SHOW TEXT VERSION
PRINT TRANSCRIPT
And I was adamant she… well I didn’t know what I was having, but I was adamant she wasn’t coming out because I knew they weren't good risks. When I was taken back to the ward when I was still in the room of four, the hospital in [City], the paediatrician comes to see you and they take you into intensive care and they show you the room.

And Imogen’s little incubator was sitting – it was a giraffe, it was empty – and it was sitting, just waiting on her, and I think that’s when it really hit me, I'm really ill. This…I'm not going full term with this baby.

I'm kidding myself that I am because I was in denial you know, I feel fine. But then I was like, 'This baby's coming early and this baby's going to be tiny,' and I'd seen the size of the incubator and I thought, 'Oh, oh my goodness she's… she is going to be tiny,' you know and it was quite frightening.

But they show you, and there was no tiny babies in the ward at the time, but they have different stages – you know they’ve got an intensive care and then a high dependency and a family kind environment, the room that’s next down, and then they’ve got individual rooms and then they’ve got… they have got a family room where you can go and see where baby in preparation for coming home. And they went through it all with me and a lot of it I didn’t take in because I was… I was very much in shock. And I was under the impression that babies born at 24… over 24 weeks they can live can't they, and they're like, "Yeah, but there is a lot of complications and a lot of them don’t." And I think the media, because you see so many success stories, you think everyone's a success and actually, no they're not.

And I didn’t know that, I was kind of kidding myself that she was going to be just fine.
 

Kay’s kidneys stopped functioning properly. She thought this caused her to feel over-heated. Doctors and nurses told her that she was very ill, but she didn’t believe it at first.

Kay’s kidneys stopped functioning properly. She thought this caused her to feel over-heated. Doctors and nurses told her that she was very ill, but she didn’t believe it at first.

SHOW TEXT VERSION
PRINT TRANSCRIPT
So I was in a room of four and I felt like I was going to spontaneously combust, that’s how it felt. It felt like I was on fire from the inside. So I went into the sitting room area and opened the window and I literally just hung out of the window in February because I was so hot. 

I thought, I just thought I was going to be sick; I was going to pass out and the end of it I fainted.

Oh gosh

And they came and got me and they rushed me down to intensive care. And I don’t really remember much about it. I know that… I remember being whisked on a trolley through the corridors and I knew that I was down the stairs in the obstetrician unit, and I knew everybody was fussing around me.

And they had that monitor on constantly – you know blowing automatically, blowing it up, checking it had blown up and checking it, and it was something 200 odd over… and I was just like, "Do you know I didn’t know you could go that high." You know what I just wasn’t aware of it. Anyway everything seemed to calm down, and the next day I was back up on the ward, and I felt, 'Whoa that was just a wee blip.'

But they moved me from that day, they removed me to my private room right opposite the nurse's station, and I was like, "Why am I in here?" and they're like, "Because you are the illest woman in here," and still that message didn’t get through. I know I'd felt a bit hot; I know I'd… but I didn’t feel ill. 
 

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.

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.

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…
 

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.

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.

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. 
 

Kay was very unwell but it was important to her to spend time with her daughter, as she didn’t know the chances of her baby surviving.

Kay was very unwell but it was important to her to spend time with her daughter, as she didn’t know the chances of her baby surviving.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I went up to see her in the wheelchair and I was ill, I was really ill. I shouldn’t have been there. I just kept thinking, 'I've got to see her in case she dies. I just want to see my baby.' So I'd seen her and they said, "You can't hold her but you can cup her." So, I pushed the wheelchair in and I just sat with my hands on her head and her little bum, and I was there for about half an hour, and I was so ill. They took me back down and I just remember thinking, 'I have to get out of intensive care,' because once you're on the ward you can come and go as you please, but intensive care they obviously don’t like you just get up and go up the stairs. And so I went to see the nurse and she said, "We'll see how you are tomorrow." So, I rested all day and my mum came in and my other daughter came in and I tried to warn them what they were going upstairs to see because they're so small you just… nothing can prepare you for that. You can see as many pictures and you can read as many books as you like, but nothing prepares you for a baby that size. 

So, I… the nurse said, "Come on," the next morning, "we'll get you showered." So, I went and showered and I fainted. It's just so hot… the showers are so small; it's an old hospital and I fainted, and I said to her, "Look it's the heat." My kidneys still obviously weren't working and I was still overheating all the time. But she spoke up for me with the doctor and said, "Look, you know she really wants to go upstairs." So they put me upstairs, and the nurses, they'd kept my room for me. So I was still outside the nurse's station, and it was good because when you're up there you can come and go as you please, and they helped me express milk for her and obviously my body wasn’t ready for that, I was only 27 weeks pregnant; I was ill; it was a shock. 
 

Kay said the nurses knew her baby well. They helped build up Kay’s knowledge and confidence for looking after her daughter.

Text only
Read below

Kay said the nurses knew her baby well. They helped build up Kay’s knowledge and confidence for looking after her daughter.

HIDE TEXT
PRINT TRANSCRIPT
And when she first… we first found out she had chronic lung disease and I said to one of the nurses, "Is my baby coming home with oxygen?" and she was like, "I can't answer that." I went, "Please," and she went, "Yeah, your baby's coming home on oxygen," and the honesty and the professionalism of them was outstanding. Their support, not just your baby, but to you as parents you know – making sure you're… you know everything. I mean, don’t get me wrong, the doctors were brilliant, I wouldn’t ask them anything. I asked the nurse because they know… they know those babies inside out. The charge nurses, the three of them; two of them are older and they’ve worked in that industry 30 odd years; they know more probably any doctor about my baby because they're with her every day. And they really did save her life. All her techniques, all the… all the pushing you know. Like the first time she went in her…come out the incubator and went in a hot cot. I was having kittens; couldn’t sleep that night. I was like… don’t know what I thought; she was going to freeze to death or something, that was never going to happen. I'd wrapped her up so well. The next day I went and said, "Look…" she was actually overheating [laughs], "You were cooking her." 

She was in intensive care and they were having a debate – the nurse and the doctor – about… there was a new baby coming in needing intensive care, so one had to move to the next level down, the high dependency, and we were listening, and it was like, "Oh you know Imogen’s the smallest baby in this ward still, but she's the most stable."

And we were like, 'Oh we're going to get out of intensive care,' which is so stupid because you're only moving into another room [laughs]; the same equipment's there, it's just a lower ratio nurse to patient. And we were over the moon; we were like, 'Yes.'

It was a step forward. You know they didn’t look on her as being weak; they looked at her as being, 'Yes she's small, but she's stable, she's doing well.' And they gave us the confidence to handle a child.
 

Kay had her health checks done at the hospital when she was visiting her baby.

Kay had her health checks done at the hospital when she was visiting her baby.

SHOW TEXT VERSION
PRINT TRANSCRIPT
After I was discharged from hospital I was in there every day seeing Imogen. And because it was a small maternity hospital it was just the bottom level was your pre-natal appointments and a triage system.

And I had to go in there every day and get checked. So, they would check my blood pressure, they would check my urine, they checked my stitches, they took the stitches out and I continued to go, oh weeks, weeks after because I was still on… I was still on blood pressure tablets at that point as well. So I was under their care basically the whole time Imogen was in hospital. And then when I came out I was in the care of my GP.
 

Kay still thought of the hospital staff who helped her baby survive.

Kay still thought of the hospital staff who helped her baby survive.

SHOW TEXT VERSION
PRINT TRANSCRIPT
The staff, they were just fantastic. They [sighs]… you know they were just… they were so encouraging you to look after your baby. I'd come in and I'd say, "Right, I'm in, she's mine now, I'll do everything that needs to be done," you know what I mean? And they were like, "Yeah fine," they were really, really good, and still are. Do you know we pop in the ward when we're in our consultant for her chest and we take them in some goodies and strawberry tarts or something, and we, when we go on holiday we always send them a postcard to say, 'Look, you know we wouldn’t be here if it wasn’t for you,' and yeah they're a good team.
 

Kay’s experience left her traumatised. She was rushed to Intensive Care multiple times and her baby spent three months in hospital.

Kay’s experience left her traumatised. She was rushed to Intensive Care multiple times and her baby spent three months in hospital.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I suffered through PTSD through the whole experience. I didn’t know that’s what I had. I knew I wasn’t right. I was nightmaring every night the same… woke up the hospital. It happened when she was in there; it happened for years after she was in there. They don’t tell you that’s something… I looked at the Bliss website and it's quite common [sniffs]. And the doctor said, "Oh you were three times rushed to intensive care." You go down there, you don’t know if you're coming back. And once you get through all that stress, you’ve got the stress, 'Is my baby going to live?' and it's the most stressful thing in the world. If people… people don’t understand your family they want to try and understand but they don’t.

You know. You're going to bed at night and you're thinking, 'Am I going to have a baby in the morning; is she going to be alive?' If the phone rings when we're not in the hospital is that… is that my mum phoning to say, "How are you doing?" or is that the hospital saying, "Look I'm sorry she's passed?" I said, "Don’t phone me, nobody phone me."

Just… and then we were told, after a while she had a scare infection, we weren't allowed her out. My first cuddle with Imogen she was ten days old. I spent the whole half hour holding her crying, she was so small. And she took an infection and we knew one infection – game over – and she fought through it, and we weren't allowed to hold her for two weeks. 

Not being able to hold your tiny baby who's fighting for her life [cries], to comfort her, to let her know you're there, it's so hard [sniffs]. 
 

Kay had feelings of guilt, which made it hard to talk to other people about what happened.

Kay had feelings of guilt, which made it hard to talk to other people about what happened.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I find it hard to tell people what was going through my head in those days. Because you have a lot of guilt.

You know, before she was born – I know I'm ill; I know this baby's going to come early; I know this baby might die and it's my fault, and everybody's like, you know now, "Oh you can't say it's your…" "Yes I can, it was my fault. Nothing is ever going to make me think it wasn’t my fault," you know what I mean? If the baby had died it was because I had pre-eclampsia; it doesn’t matter why I had it, I had it and I felt very responsible for that. When she was first born and she was so ill it was hard; it was like I felt that was… I had caused that, I felt responsible for how ill she was.

I still feel responsible. She has a hard life; she struggles to breathe, she tires easy, she doesn’t run around like other kids do, and I still feel responsible, that will never change.

It's a hard thing to admit. I think the fact that nobody really knows why pre-eclampsia happens and therefore we can't stop it. It's not a thing you can stop. Once you’ve got it there's not a cure. You know they can give you medication to keep your blood pressure down and rest and whatever, but they can't stop it. It just, just gets wild and it progresses so aggressively. You know where you go on… you go in thinking, 'Oh I've got a cold,' and three weeks later you're thinking, 'I just want to die this is so bad.'

That’s quite an aggressive illness and yet we know very little about it. They… after she was born the consultant said, you know, "We're going to send the placenta away and we'll do tests on it." But you'll still not have an answer.
 

Kay had to keep her distance from her stepchildren as picking up a bug was a serious risk to her premature baby. She held a family celebration when her baby daughter was home from hospital.

Kay had to keep her distance from her stepchildren as picking up a bug was a serious risk to her premature baby. She held a family celebration when her baby daughter was home from hospital.

SHOW TEXT VERSION
PRINT TRANSCRIPT
And [partner’s name] kids were young and at nursery and school and I just thought, 'I can't have your kids here I'm sorry, I just… I cannot risk making our daughter ill.'

So, the first month we didn’t see his children, and after a month she was still very ill but I don’t think it was quite as worrying, so the kids got in to see her then.

It had an impact on them. Usually when a baby's born there's a big celebration, you know everybody's happy. Imogen came along and there wasn’t that. It wasn’t a happy occasion, it was a worrying occasion. In the August we had a party for her – a naming day ceremony –not for… it wasn’t for Imogen it was for everybody else. It was for everybody that had been affected; we had a party and a disco and a buffet and we had a really good day out in the local club, and it was kind of like introducing her to everybody because obviously nobody had seen her because she was so fragile. And for us, to actually celebrate that, you know we've had a baby. And not only did we have a baby, we had a baby that really wasn’t given good odds and is alive and kicking. She was still on oxygen and everything, but… but we needed that.
 

Kay hadn’t felt ready to talk about what had happened, but she thought it was important for family members to be told when the situation is/was very serious.

Kay hadn’t felt ready to talk about what had happened, but she thought it was important for family members to be told when the situation is/was very serious.

SHOW TEXT VERSION
PRINT TRANSCRIPT
If you're like me and keep things to yourself because you don’t want other people worrying it's a lot on your shoulders.

And I think that’s maybe where I went wrong. I think I maybe should have sat down and said to people, "This is how I'm feeling." With my mum… my mum casts up at me that I didn’t let her come and visit me. She's not a clue, not a clue. I was lying there fighting for my life Mum, I really couldn’t be bothered if I'm honest. She… she… Imogen was born on a Monday and my mum gets annoyed I didn’t let her see her till the Tuesday. It was like, "Mum I hadn’t… I hadn’t seen my baby; I'm not going to let you see my baby before me," you know. So, I think, you know maybe I should have sat, or someone should have sat my mum down and spoke to her and said, "Look,"…you know I don’t think she really realised she might lose me. I don’t think that had entered into her head. You know she just thought I, you know she didn’t realise actually I wasn’t able for a visitor you know. But when somebody comes to visit you, you try and sit up and you know, I just couldn’t do it.
 

Kay was told that she would be on blood pressure tablets permanently and that her kidneys would not recover. Both improved after a few months.

Kay was told that she would be on blood pressure tablets permanently and that her kidneys would not recover. Both improved after a few months.

SHOW TEXT VERSION
PRINT TRANSCRIPT
And they said to me, you know, "You're probably going to be on blood pressure tablets for the rest of your life," and I was like, "Well that’s quite funny because I always had quite low blood pressure before," do you know what I mean? He was like, "No you'll be on these for life I think." So I was on them and then they monitored obviously my kidneys and they took a while to repair and recover from that.

That was sixteen weeks after before they said, "Look, you know you're sort of back to normal now." Because at that time you're still thinking, 'Are these ever going to work again; are they right?' because they were talking dialysis and is that going to happen? 

And then they did the monitor. They kept taking my blood pressure, it was still high.

And I said to them, "Look this is because I'm stressed because I'm coming in here because I'm worried about it being high." And she said, "Well what we'll do is we'll put the 24 thing on you," – superb – and over the 24 hours I went back down to 90 over 60 or something, so it had went back down to where it should be which is where it always was. I think now I sit about a 110 over 90 so nothing compared to what I was and I'm not on any medication now at all.
 

Kay said blood donation was especially important to her now because her baby depended on this to survive. It was upsetting that she can’t be a donor while she has low iron levels in her blood.

Kay said blood donation was especially important to her now because her baby depended on this to survive. It was upsetting that she can’t be a donor while she has low iron levels in her blood.

SHOW TEXT VERSION
PRINT TRANSCRIPT
And all of a sudden my iron levels, my ferritin, is not very good, and I've always been a blood donor, always since I was 17 and I've been rejected now.

It's not anaemic low but it's not enough to give blood which is quite worrying.

More so because Imogen had five transfusions and I feel that… it's funny I've always given blood because my mum needed blood transfusions having my brother and my younger sister. And I've never… and you pick up a leaflet and you see a new-born baby needs a teaspoon of blood, you know and I used to think, 'Why, why would he need blood; prem baby – why would a prem baby…' obviously now I know or my prem baby is what. And I just think to myself now, 'I've been that mum,' and they’ve said, "We're going to have to give her blood transfusion."

And I've sat there and thought, 'Thank goodness there's blood donors.' You know and I am one of them. So now giving blood is more important to me than ever because I know there's a mum sitting somewhere with a little baby waiting on that blood.
 

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.

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.

SHOW TEXT VERSION
PRINT TRANSCRIPT
There's ones who haven’t 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 a…I mean when Imogen was small and I wanted to go to meetings I couldn’t 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’t really like…" she knew why I didn’t want to go to soft play – she knew that would be too dangerous. Why did she know? Because she's been there.
 

Kay met people through a premature baby support group, some of whom have had experiences similar to her own.

Kay met people through a premature baby support group, some of whom have had experiences similar to her own.

SHOW TEXT VERSION
PRINT TRANSCRIPT
And people, other people at the group, they had young babies but they didn’t have the same complications. And I realised quickly there's a difference between having a prem baby and having a micro-prem baby – there is a difference. You can have a prem baby and it's four pound odd and it has nothing, no serious impact, but when you have a baby under two pounds you're going a whole different…a whole different kettle of fish, it's completely different.

And so there's not many that come along as small as Imogen. But when they come on, because at the hospital…the hospital has this group; it's got an online page and the consultants are a member of it too, the paediatrician consultants are a member and a lot of the nurses are members of it. And it's good because we post before and now pictures – then and now. And also we , we speak to other mums who may come through and they go, 'My baby's blah blah blah,' it's like you know what, 'We're there for you; if you need a coffee; you just need somebody to talk to, believe me we have been there.'
Previous Page
Next Page