Aileen

Age at interview: 40

Age at diagnosis: 35

Brief Outline:

I had pre-eclampsia in both of my pregnancies, with the births at 7 months (34 weeks and 30 weeks respectively). I have a history of high blood pressure and so I was seen by a specialist consultant. Both of my babies spent some time in a Neonatal Intensive Care Unit.

Background:

My name is Aileen; I am 40 years old and a nurse. I am married and have two children, one daughter aged 7 and one son aged 5. I identify as Filipino.

More about me...

High blood pressure problems

I developed pre-eclampsia in both of my pregnancies. My children were born at 7 months (34 weeks and 30 weeks respectively). I have a history of essential hypertension (high blood pressure without a known cause) which meant that I was seen by a specialist consultant in both pregnancies. I changed my blood pressure medicine to one which would be safer during pregnancy (labetalol). I didn’t have many symptoms and, in each pregnancy, the diagnosis was made because tests showed that I had high blood pressure and protein in my urine (proteinuria). The only symptom I had in my first pregnancy was some swelling in my legs and face, though I thought this was just a normal part of pregnancy at first. In each pregnancy, I stayed in hospital for about two weeks to be monitored. I had emergency c-sections when the medications were unable to control my blood pressure and it was decided it would be safest for my babies to be born. 

My first pregnancy

Pre-eclampsia was diagnosed in my first pregnancy at a routine check at 7 months (32 weeks). I was admitted to hospital, which was a shock. I felt well and just wanted to go home but I was told that I couldn’t. I had good support in the lead up to having an emergency c-section, and my husband and I were kept informed throughout. It was a good experience on balance rather than a traumatic one. The hospital’s neonatal team resuscitated my baby, Emma, and took her to the neonatal unit. She was given antibiotics in case of infections but didn’t need any further medical care. 

After I had given birth, my blood pressure was monitored on a High Dependency Unit (HDU) and I was then moved to the post-natal ward. Both Emma and I stayed in hospital in transitional care for two weeks to be sure she was feeding properly. I struggled to express milk at first and my blood pressure was still very high. The consultant advised me to return to my previous blood pressure medication, but this would mean I couldn’t breastfeed any more. The advice I was given by the midwives on the ward conflicted with this, as they wanted me to keep breastfeeding Emma. In the end, I decided to return to my old medication and use formula milk because I figured that if I'm not well then I can't look after my baby. My blood pressure settled and I was discharged with Emma. Taking my baby home made me happy but also scared in case anything went wrong.

My second pregnancy

I became pregnant a second time about 11 months after the birth of my daughter. I changed my blood pressure tablets again to ones which would be safer in pregnancy and I took a low dose of aspirin. High blood pressure and proteinuria were detected at a GP appointment 6 months (28 weeks) into my pregnancy. I was sent home with a 24-hour blood pressure monitor, but it was tricky to keep on top of recording measurements with my young daughter at home. When I returned to discuss the results, I was admitted to hospital. I was very worried as the high blood pressure problems seemed to have started earlier in this pregnancy than my one before. There were also some concerns that my baby wasn’t growing properly and so I had some checks on the placenta blood flow. The monitoring was reassuring and I was glad someone was keeping an eye on it, though I was also worried about what might happen next. 

I spent two weeks in hospital – I was in and out of the HDU as blood pressure would rise before settling down. Once my pregnancy reached 30 weeks gestation, the consultant advised me to have a c-section because carrying on the pregnancy could endanger the lives of both me and my baby. My baby’s heartbeat dropped several times and, early in the morning, I was rushed into surgery for Bertie to be born. My son was taken to NICU (Neonatal Intensive Care Unit). He was given something called CPAP (Continuous Positive Airway Pressure) which keeps air blowing into the airway. This didn’t work at first and he needed to be in intubated (a tube inserted into the airway). 

Once Bertie was stabilised and back to CPAP for breathing support, I found out that he would need to be transferred to another hospital because the NICU ward was over-crowded. This was extremely upsetting – the hospital was many miles away and it would be difficult for me to get there to visit him because I’d had a c-section and couldn’t drive for some weeks. I was told that I would be transferred to the hospital Bertie was being sent to, but this was not arranged in time so I had to wait an extra day. I was discharged a week after giving birth, despite some delays with hand-over between the hospitals. Getting to the hospital to see Bertie proved difficult. It helped that my husband was self-employed and able to re-arrange work commitments to some degree, and also that my parents-in-law lived nearby to help with lifts. My young daughter was also in nursery, which helped some of the time, but also meant it was difficult to find visiting times so she could meet her baby brother in NICU. Bertie stayed in hospital for a total of seven weeks. He has ongoing check-ups every three months to keep track of his health.

Messages for others

My advice to other women with pre-eclampsia is to not be afraid of asking questions. I’m a neonatal nurse and so I had insight into the environment in which premature babies like mine are cared for in. Even so, it was scary being on the receiving end. It has given me insight into what it is like for parents and how hard it is having to ask permission to touch their own baby and being restricted to visiting hours. I tried to be involved in caring for my babies but found the neonatal unit staff were often reluctant to let me do tasks. My message to doctors and midwives is that communication is very important and they need to speak sensitively. More communication between neonatal units and maternity units would help, and could have avoided the extra upset I felt when my baby was transferred to another hospital without me.

Aileen talked about the extra care and monitoring she received in her pregnancy when there were signs she might be developing blood pressure problems.

I was under the consultant care again and the midwifery care because of my history. And they obviously are monitoring me, and I think I went for my 30 week check-up and that’s when they detected again that my blood pressure was high – actually not 30, because he was born 30 weeks – 28 weeks.

Twenty eight yeah.

And they detected protein in my urine, and then they… just basically the same thing as last time, that we have to keep you in.

Yeh

Well actually before that they…yeah they…I had to have a 24 hour blood pressure monitoring.

Mm OK 

So they sent me home with the cuff that I had to keep on all the time, and then I had to bring it back the next day, and then they saw that the blood pressure was quite high all the time, and they decided to keep me at 28 weeks.

Aileen had experience of being on a ward with other patients and in a High Dependency Unit (HDU).

I was in hospital for two weeks again.

But during the two weeks' time I was in and out of HDU. There was a point when they can't control my blood pressure – took me to HDU for one night. They kept an eye on me a bit more on HDU, there's one to one, and then I think the next day blood pressure was stable, they decided me to… decided for me to go back to the ward. So there's a few scares that I had to go back down to HDU and thinking, 'This is it, this is it.'

But then blood pressure got controlled, went back to the ward , and then a couple of days later I had to go back down to HDU and yeah.

Mm. And what was the difference between the ward and HDU – why are they different?

Ward is obviously… it's a bigger ward. There's one midwife looks after six mums, whilst in HDU there's one to one midwifery care.

OK. And so you would reach HDU and what would happen during that time?

It'll be in one room I get connected to the… a proper monitoring instead of they're monitoring me every… I'm all continuously being monitored. I'm continuously on CTG monitoring as well.

Aileen had to stay on some wards which weren’t appropriate to her situation. Whilst still pregnant, she spent time on a postnatal ward and a labour ward.

I was in a ward; I was… there was one time I was in a postnatal ward and there's obviously mums there whose had a baby, with their babies. And I don’t think it's a good experience for parents who are scared that their baby come out early or might be well, mixed with mums whose had a well baby, healthy baby and thinking, 'That might not happen to me.'

Or being mixed with mums whose in labour and shouting and screaming and it was…that was…I think that terrified me having a normal delivery.

I heard all the swear words and all the screaming and shouting and I thought, 'I don’t want that,' yeah.

Aileen was in and out of the High Dependency Unit whilst pregnant. Her blood pressure kept climbing and, when she reached 30 weeks, the decision was made that her baby should be delivered.

I was in hospital for two weeks again. But during the two weeks' time I was in and out of HDU. There was a point when they can't control my blood pressure – took me to HDU for one night. They kept an eye on me a bit more on HDU, there's one to one, and then I think the next day blood pressure was stable, they decided me to…decided for me to go back to the ward. So there's a few scares that I had to go back down to HDU and thinking, 'This is it, this is it.'

But then blood pressure got controlled, went back to the ward , and then a couple of days later I had to go back down to HDU and yeah.

And the consultant came and said, "Now that you’ve reached 30 weeks I think this is the best time to get the baby out; we can't control the blood pressure anymore. And we've reached 30 weeks, so we'll just do it." Mm and of course the baby's stopped growing as well.

OK 

Well the growth is slow, and I thought maybe that… OK fine, if the baby's in danger inside me. And we had… because they were continuing with my CTG.

The heart rate dropped several times so they were concerned about that as well.

Aileen was a neonatal nurse and she wanted to use this experience to help when her baby was in hospital. Her experience as a mum has also shaped the ways she thinks about her job now.

There are a few things that’s done not very well. Maybe because they're familiar with me, there's a few nurses who did say to me… I would say they were very busy. They'd say to me, "Right, you're a mum, you're not a nurse, you stay where you are." So that I didn’t appreciate that because I think… I don’t know if they were expecting me to do the suctioning with this baby. Well, I wanted to suction my baby. I was asking because I could see that my baby was quite frothy and I was asking, "Oh do you mind suctioning my baby," but she was so busy with a different baby, and I'd say, "Can I do it?" and she just said, "You're a mum, stay where you are, I'll…" in that sort of tone.

Yeah, so there is that… I can see now from a parent's perspective of that there's a boundary. You can't just touch your baby whenever you want to; it's sort of you have to ask permission, and you can't just come and visit your baby whenever you want to. I mean we are… parents can come any time but there are still that… because the ward is on the second floor, the neo-natal unit is on the ground floor – it's a long walk if I have… if I ask for a porter for a wheelchair it takes a while for them to arrive and I'm thinking, you know I'd rather… I can do it now. So, there's the hindrances; there's… and then when you get there there's a boundary. They say, "Well I've just changed your baby's nappy so baby's just fallen, just you know asleep so let's not disturb the baby," and things like that. Which now in my present professional care that changed me a lot.

Aileen’s husband was self-employed. This gave him some flexibility but it was still tricky, especially with childcare.

It was difficult and I would say… as I said we were lucky that my husband is self-employed. He can juggle work; he doesn’t have to be at a certain place at a certain time; he can sort of delay things somehow. He obviously still has to work. My in-laws live in-between us and the hospital, so they helped out with the driving. My daughter then used to go to nursery so that helped somehow. But it's just obviously me seeing her I can only… and she's not allowed on certain times of the day in SCBU (Special Care Baby Unit); she's only allowed an hour possibly; the visiting time is different for siblings. So, she can only come at a certain time of the day, and obviously that will have to impact on the time that my husband can take her.

And as well she's a bit, 'Why are we in here?' Yeah, so it was difficult with the logistics. It was more difficult, it was… I think it was more difficult for my husband because he was doing everything basically.

I was in hospital just caring for my son who was on special care, whilst my husband is caring for my daughter, doing the pick-ups, thinking ahead of driving to the hospital, or picking up my daughter from nursery and all that, and he's obviously in charge of the house as well.

So, what… yeah so it was difficult. And then when I got discharged that was… became a bit more difficult – easier in some ways that I was sleeping in my own bed but knowing that I'm 30 miles away from my son.

Aileen had pre-eclampsia in both of her pregnancies. During her second pregnancy, she was in hospital and the decision was made she needed a caesarean section whilst her husband was at home looking after their young child.

And did you feel your husband was included in the decision?

No, because he wasn’t with me, he was at home caring for my daughter. It was actually quite a rush. They decided to section me at about 4am. Yeah, so I phoned him and he wasn’t answering his phone. I'm thinking, 'Why isn’t he answering; come on wake up,' and he was actually bottle feeding my daughter then so he couldn’t answer the phone. So I phoned my in-laws instead – "Can you go to our house."

Yeah. And it must have been very different while an inpatient in this…in the second pregnancy monitoring your blood pressure because you did have you responsibilities with your baby.

Yeah

How did you manage that?

It was very difficult because obviously childcare is an issue. My husband's working – we are lucky that he's self-employed; that he can manage his time easily, but if he was employed, that he has to work the set hours, but it was still difficult.

And we were lucky as well that my in-laws were nearby, that they can help out but obviously I couldn’t see my daughter; I wasn’t there. They come and visit me but very limited and I don’t want her to be in the hospital for a long time because I don’t want her to catch anything. So that was difficult.

Aileen thought it would be good if there was more coordination at her hospital between the maternity unit and the neonatal ward. Her baby was transferred to another hospital but transport arrangements weren’t made in time for Aileen to go with him.

I think that if there is a …if the maternity and neo-natal ward be a more organised… they'd be working as one instead of a separate entity. That might be asking too much, I don’t know, but maternity obviously does their own thing; neo-natal unit does their own thing. So, neo-natal unit looks after the babies; maternity looks after the mum but they are together, so I think that has to be taken into account.

It's just like when my baby was transferred they thought about my son; they haven't given much thought about the mum. Or the logistics, or the family itself. So that needs… I think that needs to be improved more.