Wellbeing of Women
Anne's Story
Annie gave birth to a baby after experiencing multiple miscarriages.
In November 2001 I found out I was pregnant for the first time. The baby wasn’t planned but we were really excited about becoming parents. I secretly bought mother and baby magazines and remember overlooking any articles relating to miscarriage as that couldn’t possibly happen to me.
However at nine and a half weeks I noticed blood. I frantically rang NHS Direct who reassured me that this could happen and not to worry. But the following morning the bleeding continued and my GP arranged a scan for the next day.
The following morning my worst fears were confirmed – there was no heartbeat. The next two days were horrendous. I was given tablets to evacuate my womb that worked too quickly and I ended up in hospital overnight being monitored. I returned home somewhat shell shocked by the speed at which everything had happened and facing up to the fact that I was no longer pregnant. I took a week off work and didn’t tell anyone what had happened. We would try again and this time things would be different.
I became pregnant again the following August. We were in the middle of renovating our house and planned the pregnancy so that the baby would be born after the work was finished. At that point I still believed you could plan pregnancies! I wasn’t worried about miscarrying, as I didn’t believe that it could happen again. Lightning doesn’t strike twice and all that.
However at six and a half weeks I started bleeding. A trip to the Early Pregnancy Unit (EPU) showed that I was still pregnant and they advised me to come back in five days. I returned and further scan revealed that there was no baby. “Sorry there’s nothing there,” was what the sonographer said.
I thanked her, dressed and then sat in the waiting room with tears pouring down my face in front of everyone there. The nurse saw me and said that normally they don’t carry out any tests for recurrent miscarriage until you have had three but due to my advancing years (in reproductive terms – I was almost 37), they would refer me now. She added that unfortunately I would probably have to wait several months for an appointment.
I took a few weeks off work to come to terms with the loss. It was hard as so many of our friends had had babies that year and it was difficult celebrating the births without feeling a sense of loss and, to some extent, jealousy that we weren’t part of that world. I knew a few people who had had one miscarriage but not many who had had two and I became desperate to get pregnant again. With every month that went by and it didn’t happen, I felt let down.
The following February I got pregnant for the third time. This time our joy was very short lived: a week after I had a positive test I started bleeding again. Another trip to the EPU confirmed that there was no sign of pregnancy.
It seems that it was all over before it had begun. I tried to tell myself that at least it had happened early on and that there must have been a problem with the baby but it didn’t help. The loss hit us really hard. The only ray of hope was receiving an appointment from the hospital for the recurrent miscarriage clinic where we hoped we’d get some answers.
We attended the clinic and went through all the standard tests and then had to wait several months for all the results. When we went back we were told that the tests hadn’t shown any problems and that the chances were that the miscarriages had been caused by chromosome abnormalities, which were probably due to my age. Unfortunately, there was nothing we could do about that!
All the articles I’d read about older mothers came to the fore and we decided that we would try again straight away. We were reassured that in the next pregnancy we would receive early scans to check on the baby. I embarked on a healthy diet with no alcohol and nine long, stressful months later I finally got pregnant again.
We were on holiday in New York and I suspected I was pregnant but I didn’t dare do a test as I wanted to wait until I got home. I spent the whole of the flight home worrying that I was going to start bleeding.
As soon as I got home I rang and arranged an early scan. I then travelled to London every week for three weeks to check on the baby’s growth and everything seemed to be progressing well. My local hospital wouldn’t scan me until I was nine weeks and I felt I couldn’t wait all those weeks wondering if the baby was OK.
At the end of nine and a half weeks we attended our first scan together and saw the baby’s arms and legs moving around and heard the heartbeat. Our consultant reassured us that it was very rare to lose a baby at this stage. It seemed that finally things were going our way and we decided to spread the good news amongst our friends and family, many of whom didn’t know about the previous miscarriages. However on New Year’s Eve 2003 I realised I was bleeding.
Panic set in and I felt as though I couldn’t breath. It surely couldn’t be happening again. What had I done to deserve all this? Had I done something terrible in a previous life? We left and went home immediately. I went to bed as I thought if I lay down it might help. First thing the following morning I rang the doctor who told me not to worry (famous last words) and that he couldn’t arrange a scan until the next day as it was a bank holiday.
We were in the same room with the same lady who had scanned us three weeks before and she seemed genuinely upset when she told us that there was no heartbeat. This time I asked for a D and C and within a day it was all over and I went home. They sent the baby away to the pathology lab to try and see if they could find any reason for the loss.
The next couple of months were awful. I didn’t want to go back to work as I couldn’t face people and just wanted to stay in the house where I didn’t have to see anyone. Every time I went out I seemed to see pregnant women and felt taunted by their big fat bellies. I felt that no one understood how I felt and, to be fair, how could they? Not many people experience recurrent miscarriage. Most people didn’t know what to say and so didn’t say anything. Returning to work was horrendous and I spent quite a lot of time in the toilets trying to control my emotions.
We returned to see our consultant and she explained that they were unable to get any results from the baby. She couldn’t really offer any further advice and told us that she was sure the next time things would work out for us. I asked if we could be referred to St Mary’s in London but she didn’t feel this was appropriate. I left feeling very downhearted as I didn’t believe that the next time things would be different.
I was convinced that I was losing the babies for a reason and felt that I couldn’t try again until I had explored things further. I spent hours on the Internet every night reading and devouring every piece of information on miscarriage I could find. I read medical reports with a medical dictionary on hand trying to understand the research and whether I could relate it to my circumstances.
Then one morning my dad rang me. He’d been listening to Radio 4 and said that he had just heard a piece about a doctor in Liverpool who was doing research into recurrent miscarriage and needed volunteers for her next study. I listened to the programme on the Internet (God bless the Internet!) and was fascinated to hear that the doctor believed that some women had high levels of natural killer cells in their womb, which she thought might be responsible for miscarriage. She needed women who had a history of recurrent miscarriages with no known cause to take part in the study and provide biopsies of their womb linings.
I immediately rang the helpline, got the number of the hospital and rang the following day to ask if I would be a suitable candidate. I was worried that I might not be as I had lost two babies late on in the first trimester. They suggested that I get a referral from my physician and then make an appointment to come and see them so that they could look at my history in more detail. My consultant wasn’t keen and felt that my losses were too late for me to have this condition, so I went to my GP and he was persuaded to refer me.
In May 2004 I saw Dr Quenby for the first time. She explained that she had discovered that some women with recurrent miscarriage have high levels of natural killer cells (the body’s defence mechanism) in their womb linings and she believed that this was in some way causing miscarriage. Her study involved taking a biopsy from my womb lining and then examining the results. If the results were high then she would put me on a course of steroids for a month and then take another biopsy to see whether the levels had dropped.
Five weeks later she rang me. I was working in a polling station and so couldn’t scream or tell anyone when she confirmed that my levels were 22%, which were extremely high compared to the norm of about 5 – 8%. I felt elated as it confirmed what I felt I had known for some time and there was a reason for what I had gone through.
I started on the steroids and towards the end of the month made the journey to Liverpool again for the second biopsy. Dr Quenby explained that if the levels didn’t drop then maybe I couldn’t be helped so there was a nervous wait for the results another month later.
Surprisingly (for us!) it was good news. My levels had dropped to 6% and Dr Quenby suggested that we try again but this time taking the steroids whilst trying to conceive. Six weeks later, to my complete shock and disbelief, I was pregnant again. Delighted and terrified all at the same time, I decided to try and forget I was pregnant to aim to get through the first few weeks of hell.
Make no mistake, when you have suffered a loss previously, that is what it is. Any slightest pain or twinge and you think that it is going to happen again. However as I always suffer terribly with all-day (morning is a misnomer) sickness, I couldn’t really forget. We had our first scan at ten weeks and everything looked good. We went home and didn’t talk about it or tell anyone. We’d learnt our lesson! I rang Dr Quenby to tell her things were still progressing and she told me not to worry. At twelve weeks we travelled to London for an anomaly scan for Downs syndrome at the Foetal Medicine Centre. On my 39th birthday I watched in amazement this tiny baby standing on its head in my womb, very much alive and apparently perfectly formed. I will never have a better birthday present!
However we were told that I wasn’t producing enough pregnancy proteins and that they would recommend close monitoring of the baby after 24 weeks for growth retardation and premature delivery. I was concerned but tried not to think about, though I did worry that the old natural killer cells were in some way affecting the baby’s placenta.
At 17 weeks I finally started to tell family, friends and colleagues that I was expecting. I went through a really hard few weeks at this point as I felt exhausted all the time and had no energy, and so had to take a few weeks off work. Just before Christmas we had the 20 week scan, which showed the baby was fine and was a boy. We finally began to relax and after Christmas actually allowed ourselves to look at a couple of baby items and ordered a pram.
We had further scans at 24 and 28 weeks to check on the baby’s growth and up until 30 weeks everything seemed to be going well apart from pain in my hip from an earlier car accident. I ended up on crutches and had to go on sick leave from work. I started to feel very tired all the time again and the baby didn’t seem to be moving around very much. Just before 31 weeks I was scanned again and this time the baby hadn’t grown since 28 weeks and the placenta was failing. Next thing we knew I was having steroid injections in my leg to help mature the baby’s lungs and after two days of constant monitoring Lucas was born by caesarean section weighing 2lbs 13 oz. They had warned that breathing might be a problem but Lucas came into this world crying at the top of his voice. For a minute I thought there must be another baby in the room!
I saw him for about two seconds before he was whisked away to the Special Care Baby Unit and then had to listen to my partner’s running commentary of what was going on whilst they sewed me up. Not quite how I imagined the birth of my child. I didn’t see Lucas for seven hours whilst I recovered from the section and then I was wheeled on my bed into the Intensive Care Unit to be confronted by this tiny, hairy, fragile looking baby with big eyes. He was a dead ringer for Gollum with long arms and legs, which I later realised was because he had no fat on his body. He was beautiful.
Eight weeks later we left special care after several setbacks, including a transfer to another hospital that left us wondering whether we would ever take him home. He was still tiny and weighed 4 lbs 6 oz and was wearing what looked like doll’s clothes. He had a few problems over the first year but is now almost eighteen months old and runs around constantly. You would never guess, apart from his slightly smaller size, that he was born too early. A few months after his birth, I discovered that Lucas was the first baby born as a result of Dr Quenby’s trial. I am grateful that she didn’t tell me that whilst I was expecting him, as I probably would have lost the plot with worry.
She has since recently carried out further tests on me and discovered I have other problems that may have contributed to Lucas’ early arrival into this world, so I am taking part in ongoing research. I just hope that my experiences will enable doctors to learn more about the condition and so help women in the future not to have to endure the misery of repeated miscarriages.
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