Interview 35

Age at interview: 42

Brief Outline: After recurrent miscarriages, first baby born at 23 weeks and spent 5 months in intensive care. Next pregnancy closely supervised including 10 weeks as an inpatient. Baby born healthy at 37 weeks.

Background: Children' 2, aged 2 and 5 weeks at time of interview. Occupations' Mother- teacher (head of science dept), Father- town planner. Marital status' married. Ethnic background' Black British.

After three miscarriages, investigations showed she had a blood clotting disorder. It was a...

The specialist hospital explained that it was quite common to have miscarriages. It wasn't, to have one as late as seventeen weeks wasn't common and what they would look into is a type of blood clotting disorder that women who tend to have recurrent miscarriages they, they seem to have this, this phenomenon really. And so they explained that they would have to do several blood tests and it would take a few, a few months. That if I was found to have this sort of blood clotting disorder then there was a course of aspirin and heparin injections which would thin the blood and hopefully prolong the pregnancy. And so that's what they explained would be the sort of course of treatment once I had, once I had got pregnant.

Did they in the end decide that that is what you had?

Yes. It was.

What's it called?

It's called antiphospholipid syndrome and basically the blood clots in the placenta and therefore oxygen cannot get to the fetus and the fetus is aborted.

So how were you feeling at this point, because you'd been through a bit already?

I felt, I felt a sigh of relief, actually, because, because now I could, now they had pinpointed what, what, you know, what my problem was. And it wasn't anything that I had done or not done. It was just one of those things, but at least there was some sort of treatment that would give us, that would give us a better chance of prolonging the next pregnancy.

And I mean had, the three miscarriages, had that put a strain on between you and your husband? What was, you know, how were you coping as a couple with all of that?

I don't think it, no, it didn't put a strain on me and my husband. I think it really, it actually brought us closer together. I, it's something that we, we both dearly wanted. My husband already had an older son from a previous relationship, older child from a previous relationship, and we desperately wanted, we dearly wanted our own. But no, no, no, it didn't put, it took - it even brought us close, much closer together, and he was very much involved with all the hospital appointments, seeing the specialist, every step of the way.

So once you had a diagnosis were you feeling more optimistic about the future in terms of future pregnancies?

Absolutely. I'm, I, we're very positive people anyway, and we very much, we have a, a very deep rooted faith and we knew that at some point we would have a child. We didn't know how long it would take but we would, we know, we knew that we would have a family. And yes, we're very, very optimistic about the future in terms of the, the treatment that would be available.

In her most recent pregnancy she took medication for the blood clotting disorder and also had a...

I didn't [sigh] I just again, it, it does come down to my faith, our faith. I just felt that whatever happened somebody up there has got it in control. So we just needed to take whatever medical advice possible. Go to the specialist hospital, by now they knew us very well, [laugh] they knew us very well. Go to the specialist hospital. Stop working. And this time one of the things that they didn't do the last time was to put a, a stitch in, because they, they were working on the fact that I had the, the blood clotting disorder, and the cervical incompetence wasn't an issue, but to cover all eventualities this time I would be on aspirin, the heparin. I would have a, a stitch put in at twelve, thirteen weeks, which is very early, and be constantly monitored at the specialist hospital.

She was shocked to go into labour at 22 weeks and afraid the baby would not survive. He spent 5...

I was going to have my normal scan and I remember, remember the day quite vividly. Went to the car park at the local hospital. The, all of the floors were, car parking floors were full so I had to park right at the top floor and, and walk down. So several flights of stairs. Got into the, into the ultrasound room and the sonographer looked on my scan. Well, she was taking too long and by that time I'd had so many scans I could read the scans myself. So I said to her, 'Is there a problem?' and she said, 'No.' Well, no, she said, 'I have to, I can't comment. I have to get someone more senior.' And the first thing I said to her was, 'Is the cervix open?' And she said she cannot comment, comment she needs to get someone senior. So a more senior sonographer came in and just said, 'Well, are you in any pain?' And I said, 'No.' 'Do you have any discharge?' I said 'No.' And then it, she said, 'Well, your baby is coming'. And at that point my whole body just, I just, I just shut down because I couldn't believe what, what they were saying, the baby was coming.

And how many weeks pregnant were you?

I was twenty-two plus about five days. I just couldn't believe what, what I was hearing. And because there was no physical sign, no pain, I thought, 'Oh well, they've got it, they've got it wrong.' So I was told not to move off the, the couch. They got a wheelchair and said, 'You're going to have to go into the labour ward.' So I said 'Well, could you call my husband?' Anyway, they said that because it was so early, you know, that the child's survival is very, very low. And that, that it, to help the baby survive they would have to give me a course of steroid injections to mature the baby's lungs, but the injections - there would have to be two injections and they have to be twelve hours apart - but they weren't sure whether I would hang on for the twelve hours. So they had me on a bed with my legs elevated to act against gravity. Luckily I managed to hold out for the twelve hours and got the two steroid injections to mature the baby's lungs.

They needed to transfer me to a, another local hospital that had a special care baby unit for very, very premature babies, but they weren't, they weren't sure whether the undulating of the ambulance would set off the, the labour. Anyway, eventually they did take the chance and I got to the other hospital and within, within a few hours I went into spontaneous labour. And my son just popped out, a vaginal birth. If you blink, if you'd blinked you'd have missed the birth. He just popped out and they scooped him up and took him up, took him away. And funny - I remember sort of seeing his arms just waving in the air and sort of frantically working on him in the corner but he was, he was fine in terms of physically.

Then it was sort of, it was five months of up and down, roller-coaster of emotions in the special care baby unit. After four weeks, after four weeks he developed a blood clot in the hand and lost, lost the hand. Well, the hand, the hand - most people think it was amputated, but it wasn't. It just died and that, and that came off. And then there were trips up and down Great Ormond Street because of the lungs. Feeding. Eventually he stabilised and we spent as I say five months in the special care baby unit at this local hospital. And my son came out of hospital in, two days - no, sorry, three days after the date, the expected date of delivery. Off oxygen, so he didn't have to come, he didn't have to come home with any oxygen, which is very unusual for such a premature baby. But to date he is doing very well.

It took a long time to feel attached to the baby when he was in special care. She found it hard...

And how did it feel to have this tiny baby being worked on by a team of doctors and whisked away to special care and?

It took a long, it, I remember it took a long, it took a long time for me to feel attached, attached to the child, because when he was in a special care baby unit in the incubator you, I could put my fingers in in the side and touch him, but it still didn't seem real. It just, it, I felt as if I was having an out-of-body experience, so I was sort of looking down, looking sort of this situation and I was in the frame, but I wasn't. And at the back of my mind with all the machines going, I kept thinking maybe, maybe we will lose him, but I just kept praying for him to survive. And it didn't matter what happened. I just wanted him to survive. And I remember vividly one of the senior nurses coming over to me because at first I wouldn't touch. I remember I wouldn't touch him. I wouldn't touch him and she said, 'Oh come on, Mummy, you've got to', you know, and she took my, she took my finger and pushed it into, into the incubator, and I remember stroking him and he felt really hairy, just very, very hairy. And he didn't look, he didn't look, he didn't look like a human being. He looked like a little, a little rat, or a little chicken. So I remember that very vividly.

So at what point, I mean, you said that there was then a five month roller-coaster ride. Tell me about that. What were the ups and downs that you lived through?

The ups and downs there I remember not wanting to go to the hospital on my own. So always waiting until my husband, my husband came home from work so that we could go up together, because at the back of my mind I used, I would think, I don't want, I don't want to hear bad news on my own. And I remember walking onto the ward and if one of the consultants or the nurses were walking towards me I'd be convinced that they had something horrible to say. You know, something had happened - when in fact they probably were thinking about what they were going to have for lunch, or what they were going to do when they got home. So the, I went through a phase of not wanting to go to the hospital on my own. And then after a while I got over that and I would go up and tend, tend to my son because they, they encouraged you to take part, to take part in the care and the nursing, nursing of the baby. There was also the sense of when you went up the hospital and having to leave, to leave him there, because up until the sort of twenty-two weeks he was inside me and was part of us at home, being involved, and then all of a sudden we always kept having to leave him there. We, our first, yeah, his first Christmas was spent in the special care baby unit and I remember, remember decorating his crib and having lights, and celebrating him making it to Christmas.

In her most recent pregnancy she was afraid of going into labour early again. After an accident...

I took it, I took it month by month, and the sort of hurdles that I would, I would aim to get over were the nine months, the thirteen months. So the nine weeks - sorry - the thirteen weeks, the seventeen weeks. When I got to twenty-two weeks I remember becoming very anxious. Not wanting to, not wanting to move, virtually. And just making sure that I wasn't, didn't feel stressed or, and nothing was causing me to, undue stress. That the hospital also was scanning on a sort of weekly basis around the twenty-two, twenty-three weeks. But then to compound it I had, had a car accident. Yeah, I had a car accident at almost twenty-three weeks.

Oh no.

And when they scanned the cervix had started to open above the suture and at that point they said, 'Right you're going to be in hospital for thirty, for the ten weeks - a month - yeah, ten weeks. And I remember thinking, 'Oh my God, ten weeks in the hospital just laying on the bed, what am I going to do?' And then I thought, 'If that's the way it's got to be, that's the way it's got to be'. So they had me in hospital, permanent bed rest, monitoring, everything, blood pressure, blood analysis scanning, everything. And after ten, eleven weeks and everything was going well they said, you know, you can come out and do a few nights at home.