Hana

Age at interview: 38

Age at diagnosis: 38

Brief Outline: Hana was expecting twins, her first pregnancy. At 37 weeks she started to feel very ill with suspected obstetric cholestasis. Her labour was induced but she was soon rushed through for an emergency caesarian section.

Background: Hana is a manager in banking and finance. She is married with twins, a boy and girl. White British.

More about me...

Hana was pregnant with her first children, twins, aged 38. The first two trimesters went well, but in the third trimester she started to feel unwell. She was itching on her hands, feet and bump and noticed that her urine and stools had changed colour. She also developed diarrhoea. She reported all this to her consultant but they did not give her any diagnosis but were monitoring her bloods and liver function.

 

At 37 weeks, she was still feeling very ill. She had been in the hospital with bleeding three or four times which had been very worrying for her and her husband. The week before her planned induction date, the hospital called her to say that her liver function was not good and asked her to come in the next morning. She went in and was monitored. After a few hours they decided to induce her. They administered the drugs and then she asked if she could have something to eat, she had eaten only a bowl of cereal and was anticipating a long labour. But things developed very quickly. They had trouble finding her son’s heartbeat, and worried he was in distress so she was taken through for an emergency caesarean. Hana’s excitement at her twins arriving in the next few minutes soon turned to terror. The junior anaesthetist failed to intubate her, she vomited and stopped breathing. Her husband (Craig - Interview29) was shoved out of the operating room, the crash teams were called and it was an emergency to get the babies out and Hana breathing as quickly as possible. The babies were OK - they were taken to intensive care where her daughter stayed for just a few days and their son a couple of weeks. Hana woke up in intensive care (ICU) having no idea what had happened to her. Obstetric cholestasis was never formally diagnosed although she still has problems with her liver, even eight and a half months on.

 

Hana spent a few days in hospital, in a private room that they paid for, before being discharged home with their daughter. She was in a lot of pain from the surgery and in her back, and struggled to cope with the pain, breastfeeding and visiting her son who was still in hospital. She soon gave up breastfeeding as it was more than she could cope with. Their son came home a week later. Everyone was doing well (at the time of the interview) but the experience was very frightening and she was very unwell for quite a few weeks after discharge.

 

Hana had emergency surgery to deliver her twins. Waking up in intensive care was “very surreal”....

And yes, I woke up the next morning. I felt I was in Spain or somewhere. Actually it was quite surreal, because I was in a place which didn’t look like an NHS hospital, it was very clean, it was very spacious. And as I say when I was being put, well going back to when I was being put under, I just kept saying to myself I was, I was going to be okay, and it was like I was like saying to you earlier before we were recording that I had spirits or somebody or people watching over me. Because I have this phrase that I say to myself, ‘I’m surrounded by golden light of love, warmth and protection’, and I say that to myself when I’m in times of trouble or need or whatever, and I remember saying that to myself when I was being put out. And I really do believe that. That helped protect me and that stage, and I’m glad when I look back at that, that it was something that I feel is quite important.

 

And so when I woke up the next day in this bizarre place it was quite strange, when I woke up with my husband next to me. He had a picture of my two children one of him holding [daughter], she was the bigger one she was five pound ten and [son] who was four pound five, he was in the, in the incubation. We had a picture of him. And it was quite emotional at that point, because I’d had my children but they weren’t with me. And it was really quite sad because it was something that was going to be really important to me to experience this natural delivery and it wasn’t like that at all. And I feel as though I was a bit robbed to be honest with you that it didn’t happen like that. 

 

Hana struggled to establish breastfeeding her twins. It was a nightmare and when she stopped she...

And [son] was in there, because I say he had jaundice and then he was low birth weight, group B Strep and then he had had some sort of, they thought an infection. He was being fed by tube initially, and then he was rejecting. He was rejecting the milk, so then they had to do it through a tube through his nose. 

 

And then there was the pressure on trying to breastfeed. My daughter, who obviously I’d not seen for 24 hours or whatever, she’d started on a bottle and she was taking the milk. I tried to breastfeed. It didn’t work. Then I was trying to express with the pump. And then, then my son he wasn’t taking milk. So I was literally, they were saying, “Your breastmilk would be really, really good for him.”

 

So I remember of a night time, it was like an hour trying to feed my daughter with the bottle because I thought I just can’t do breastfeed with her because she wouldn’t take it. And then I was doing an hour on the breast pump, trying to create milk for my son to try and help him, and then literally the next time round, it was like 30 mins later, I was started to feed my daughter again and it was just continual. And I just had no energy whatsoever. I was just completely exhausted. And then my son, as I say, he was rejecting the milk. So I was trying my best to try and give him something. I felt so guilty because I wasn’t producing enough for him. It was just really stressful. It was not a nice time at all.

 

And my son, he came home, two weeks after and we were having… The hospital said to us, he’ll be feeding I think it was 40 mls, 40 to 60 mls every three to four hours. And I was like okay that was fine. He was taking 10 or 20 mls. Nothing. And he was not feeding hardly at all. We were feeding him every two hours and obviously with my daughter trying to feed her as well, expressing at the same time, it was just, it was just a nightmare. A physical, emotional nightmare. It was just awful. And it was just, it was just so wrong in terms of the expectation that we had when we took my son home.

 

So obviously within time, and I was very, very fortunate that I had the support of the midwife who was very, very good. She made me feel so much better when I’d made the decision not to, to stop expressing and to not breast feed, and she did say to me, “After what you’ve been through [name]” She said, “Nobody would actually look down on you and say that you’ve not tried etc.” She said, “I’d probably be exactly the same.” It made me feel so much better having made the decision to stop expressing. It made me. It was like a bit weight off my shoulders. 

 

Hana had twins and found it very stressful trying to breastfeed one baby and express for her son...

So I remember of a night time, it was like an hour trying to feed my daughter with the bottle because I thought I just can’t do breastfeed with her because she wouldn’t take it. And then I was doing an hour on the breast pump, trying to create milk for my son to try and help him, and then literally the next time round, it was like 30 mins later, I was started to feed my daughter again and it was just continual. And I just had no energy whatsoever. I was just completely exhausted. And then my son, as I say, he was rejecting the milk. So I was trying my best to try and give him something. I felt so guilty because I wasn’t producing enough for him. It was just really stressful. It was not a nice time at all.

Hana went online and found a website dedicated to obstetric choleostasis which gave her...

I’ve looked regularly online around the obstetric cholestasis conditions my book was very useful to first give me the insight into it. Obviously as a result of the liver issue the LFTs I’ve looked on websites around how the liver function works and the test and this, that and the other, and really to try and found out what’s normal, what’s not normal. What’s a high reading, low reading? What the implications are, and it was only the other day actually that I found a particular website around specifically around research into obstetric cholestasis, to improve understanding and knowledge and research into it. So I’ve actually contacted them to say if they want to speak to me about my experience then I’d be happy to talk to them as well, because if it can improve people’s understanding of it, it can only be better for the people who experience it in the future. Also as well, if you’ve had it once, you’re likely to have it again, but fortunately I’m stopping at two and not having any more.

 

Yes. So looking back what about information? Do you feel that you had enough information? Or you were given enough information? You were able to find enough information?

 

I think I was able to find enough information. But had I not known or read myself around the symptoms that I had and the condition that I had the hospital wouldn’t have given me that at all. And it was literally just by a standard maternity book. It was just one of the conditions in the back and I was just reading them one day as you do and I came across it. And I just thought “hm”. Seems quite similar to what I’ve got.