AIMS Journal, 1998, Vol 10 No 4
In 1997, I miscarried two of what the medical profession refer to as non-viable fetuses. To me they were precious babies. What an awful year it was for us - sometimes I cant quite believe that we lost two babies in such a short space of time. John was my third baby and was stillborn on 27 February 1997 when I was 23 weeks pregnant. Alex was my fourth and was born on 28 December 1997 at only 14 weeks gestation.
John was a much longed for 3rd baby but whilst I was delighted to be pregnant, I was also worried from the start that something was wrong. When by 17 weeks I was only feeling fleeting movements, I panicked and asked for a scan. Although temporarily reassured (everything looked fine on the scan), I still felt that something was wrong and that no one was taking my worries seriously. At nearly 23 weeks I went to my doctor for a routine check up and he sent me for a scan that day because he felt the baby was small for dates. I was not overly concerned since I had been told that my placenta was at the front and could well be blocking much of the baby's movement. I also felt that having panicked last time when everything was OK, the same was likely to be the case this time.
I went straight to hospital and the first (junior) doctor I saw used a mobile scanner on which he said he couldn't get a "good scan", although he said he thought he could see a heart beat. I couldn't see the screen properly myself. He said that he would arrange for me to be scanned on one of the better machines down stairs and that I might have to wait for a while as they were busy. He asked if my husband was coming in and I went to phone Frank, having intended to do this anyway when I got the chance. I still wasn't worried - nothing the doctor had said had put any doubts in my mind. As I came out of the phone the midwife said that we could go down immediately as it was lunchtime and they were going to fit me in. Rather than being concerned I was delighted that, like the previous time, I would soon have the relief of knowing that all was well.
When I walked into the scan room the midwife said something to the radiographer which I didn't pick up. Her reply was a very curt "well that's not the message I was given". At the time this did not register as odd in any way, though her brusque manner did not warm me to her. She said that she would need a minute to work out what was on the screen and would then talk it through with me. She never did. She froze the screen a couple of times (this all took about 2 minutes) and then took the monitor off my tummy. She said, in a very matter of fact tone, "That's it. Confirmed. No movement". It didn't register immediately and I said "What do you mean?". She then said that there was no heart beat. I was very, very shocked. The next few minutes are a blur of distress, but I asked several times for her to check again or for someone else to check. She refused, saying that there was no point - I was "a classic case" - the baby hunched up, little amniotic fluid and no heart beat.
I was taken upstairs where 10 minutes later I had to tell my husband, who had just arrived, that our baby was dead (why could they have not waited for him to arrive before doing the scan?). We were left alone for a while and then a second doctor came to discuss the situation with us. I was offered a drug, Mifepristone and our immediate reaction was to get it over and done with as quickly as possible. I was advised to take the tablet immediately as it took 36 hours to work (and once taken the information sheet stated that there was no going back). I took it, but in retrospect felt strongly that we should have been given more time to consider the various options open to us - no one can make a rational decision when in such distress.
When we got home I realised that the independent midwife I had booked was still abroad and wouldn't be back until the weekend (I had been told to return in 2 days time for the labour to be induced). Had we been given more time we might have considered delaying things for a few days so that she could deliver me (we might also have decided to have a home birth). Our other option would have been to wait and let nature take its course. I attempted to find out what the consequences of delaying the labour after taking Mifepristone would have been, but no one at the hospital could help me. Although these were all options, we still think that we would probably have made the same decision in the end. That is not the point however - I did not feel that we were given the chance to make an informed choice.
We spent the day and a half before John's birth phoning friends and family, the Miscarriage Association, SANDS and AIMS contacts. I spoke to several midwives and to a number of women who had lost babies. Their advice and words of comfort were invaluable. I particularly wanted to know what sort of labourto expect (I have always had a fear of being induced) and what my babymight look like. I also tried to find women with older children (mine were then 6 and 3 years) to find out if they had allowed them to see their dead brother or sister. None had, but most of the women regretted this. We agonised over this decision, not knowing whether to "protect" the other children, but in the end we decided to involve them completely and I'm so glad that we did. We also requested a named midwife with whom we could meet before the labour. The hospital were initially a little reluctant to do this but we pressed the point and the evening before John was born, we met the midwife who would be with us for the beginning of the labour.
We discussed our wish to have an active and natural birth (mattress on the floor, me on all fours, no drugs, no intervention). We also requested, and got, another scan where we were able to talk through everything with a doctor. Seeing the baby for myself on the screen was very important to me and we were able to ask lots of questions about what to expect. There was also of course that last lingering doubt - could they have made a mistake? Sadly not in my case, although such a mistake would have been appalling in other ways.
We were very composed on the day of John's birth. We were over the shock and were terribly sad and apprehensive, but also prepared. We were lucky enough to have with us Nadine Edwards, my friend and active birth teacher for my first two babies.
The labour was slow in getting started and the contractions built up very gradually. I think I only had about 30 minutes of really painful contractions and then they suddenly stopped. For the next 10 minutes or so I felt the baby very slowly descending - I knelt up and held on to Frank. It was a lovely peaceful second stage. His head was born and I put my hand down to feel him. The rest of him was born slowly and with no pain what so ever. The midwife gently put him down onto the bed and I turned around. I had requested that she didn't say anything and throughout she remained quietly and unobtrusively in the background, never once invading our privacy.
As I had been expecting, John was born inside the pregnancy sac with the placenta attached - we eased him outgently and were amazed at how incredibly small he was. Small but perfect. His hands were the size of my fingernails and he fitted into the palm of my hand. His skin was dark in colour but perfectly smooth. His head was a little misshapen - the skull bones had started to overlap which indicated that he must have died some weeks before. From the size of him we think that this must have been shortly after the scan at 17 weeks (had I had an awful premonition that something was about to happen?).
We held him for a long time and were never put under any pressure to rush things. His hand and foot prints were taken by the midwife and I will never forget how sensitively and gently she did this. She treated him as if he was as precious to her as he was to us. After about 4 hours we went home, sadly leaving him with the midwife (we had decided to have a post mortem). Had this not been the case I would have had no hesitation in taking him home there and then.
The following day we went back into the hospital for a blessing and my other children were perfectly natural with John. They were instantly besotted, saying that he was cute and tiny and lovely. They were desperate to hold him themselves and to see his tiny hands and feet. I need never have worried about their reaction in the slightest. They took it completely in their stride. This has helped us all to cope.
They also bought toys to put in the coffin, which Frank made himself. We were adamant that we did not want a funeral director involved and wanted as few people as possible to handle his body. The funeral was a simple, sad graveside ceremony with just the Chaplain and the four of us.
When I became pregnant again later that year, I was desperate for every thing to be all right, but dreadfully worried. I was shocked at how overwhelming my need for reassurance was and I ended up with weekly scans. After the scan I would be fine for a day or two and then the panic would set in again. I was beginning to build up a lovely set of scan photos but at the same time getting worried about how much exposure the baby was getting to ultrasound. So I contacted the antenatal clinic and they agreed to do a Doppler check for the heartbeat every week instead. The first week was fine it was located instantly. But the following week was when the nightmare began. I was upset and crying whilst waiting to be seen I don't know why I sat and thought that either I would leave the hospital on cloud nine to finish my Christmas shopping, or I wouldn't.
When the midwife couldn't get the heartbeat, I knew instantly that my baby was dead. I was taken immediately for a scan and as I lay there I couldn't look at the screen. I didn't need to. The silence said everything. Eventually the radiographer said, "I'm so sorry..." I was told that the baby was 14 weeks and that it looked fully formed, with no obvious signs of abnormality.
I was taken to a separate room and the consultant came to see me - having had a lot of contact with him since my first pregnancy, he was visibly upset himself and I found this very touching. He explained that my options were to wait and let nature take its course, go into Gynae for an ERPC (evacuation of retained placental contents) or go onto Labour ward to be induced. I felt very strongly that I had to go for an induced labour as I had done with John, despite the fact that Labour Ward would not normally deliver a baby so early in the pregnancy.
However, having been rushed into a decision last time, I decided to go home to talk it over with Frank who was terribly shocked and upset. My main thoughts were that once again I had let everyone down and that I was going to ruin Christmas for the kids. Over the next few days we talked and decided to delay the birth until after Christmas. We made preparations - I bought and lined a lovely basket for the baby and made tiny wee sheets and blankets. We arranged the funeral and Frank once again built a coffin. We both felt numb - how could we be doing all of this again for another baby? I was quite calm until the day before the labour when I panicked - worried about what the baby would look like, whether there would be a complete body and whether we would be able to tell the sex. We deliberately chose the name Alex, which would have been fine for a girl or a boy.
On the Sunday after Christmas, I arrived at the hospital, expecting to see the same lovely midwife I'd had last time. I was devastated to find out that she was off sick and we called Nadine, who immediately came down to be with us again. We discussed with the midwife our plans for a natural labour and I'll never forget her words when I told her that we wouldn't be leaving the baby with them because we had decided against a post mortem. She said "So you're going to take the fetus home then?" I immediately replied "No, I'm going to take my baby home". I was very angry - I was having a baby not a miscarriage!
It took a few hours for the prostaglandins to work and all I was aware of was a slightly tingly feeling in my pelvis. Then I stood up and my waters broke, which was a bit of a shock. We quickly moved the mattress to the floor and got pillows and bean bags. I still had no pain - just a tingly sensation. After about 20 minutes I felt something change and knelt up. I put my hand down and the baby gently fell into my palm. I was really shocked, having expected him to be born inside the pregnancy sac, like John. For some reason, I just never thought about the implications of my waters breaking. I couldn't move because the cord was so short and we called the midwife (who we'd asked to leave us alone) - Frank cut the cord and we held up our lovely, tiny baby boy - Alex. So small - just like his brother he easily fitted into the palm of my hand. It was heart breaking. He was perfectly formed and although we can't be totally sure, looked like a boy. He was very like John, but almost unbelievably, even smaller.
We spent a long time just looking at him and holding him. Then we took him home - there he rested, in his basket next to my bed, until the following evening. Then we laid him gently in the coffin, with a present from each of us the and we lit a candle. The next day, we buried him, next to his brother John.
I was very unhappy with several aspects of my care during this time and after losing John we raised a formal complaint with the hospital about the way in which the news was broken to me by the radiographer. As a Senior Radiographer, she must have given bad news to numerous women over the years and I would have expected to have been dealt with in a much more sensitive manner. In retrospect it would appear that she told me as if I already knew and yet from her comment as I walked in, she was obviously in some doubt about this. Also, in retrospect, after reading my medical records, it would appear that the first doctor I saw knew that my baby was dead. The reply to my complaint indicates that normal procedure would have been for him to have given me an indication that there was a problem, but he completely failed to do this. The reply also indicates that the hospital have changed their procedure in order to prevent such a communication breakdown from occurring again.
To me, nothing in life can be as profound or distressing as losing one's children, at whatever age. Dealing with parents at such a time surely requires the highest levels of sensitivity and interpersonal skills, but I felt that these were not in evidence in my situation. I also felt very cheated at not being able to see the scan properly. Whilst it would not have alleviated the distress it would have helped me to accept the reality of what had happened. I also feel that I had the right to see it, as well as the right to a second opinion. I felt that denying me the opportunity was an insult both to my feelings and to my intelligence.
In addition to my formal complaint, I also wrote to the Director of Midwives to raise some questions about the administration of the drug Mifepnistone and to find out about the hospital's policy on giving a second scan. The initial reply stated that there is no written policy about the use of this drug (surely there should be?), but that it is normal practice to "facilitate the procedure as quickly as possible". However, it does acknowledge that my "opinion" about being given more time is one which they "need to make staff and clients more aware of'. It also states that a repeat scan is not normal practice where clinical findings are conclusive, but that should parents request it, one would normally be carried out.
I also wrote to the Director of Midwives to say thank you to the members of staff, particularly the midwives, who did treat us with dignity and respect. It was very important to me to have the kind of labour I wanted, despite the fact that my babies were going to be born dead. I have always felt that death should be dealt with as naturally as birth - both are part of life after all.
note:After making her complaint, Mary also arranged a meeting between senior hospital staff and AIMS, SANDS and the MA at which she explained her concerns about the lack of training and protocols to deal with pregnancy loss.
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