I've been reading articles about the grief that goes with miscarriage, and it is different from other kinds of bereavement in some ways. I found a list of characteristics of miscarriage grief and here are the items that really reasonated for me.
the loss of our dreams for this child and the future
For all my pregnancies I knew the due dates and I made plans. For my last two pregnancies I had planned maternity leave, baby gear, cloth nappies, breast feeding, child care ......
the loss of trust in the body we feel has betrayed us
How could my mind and my body be so at odds with each other? How could I not have known that things had gone wrong before I started to bleed or had the scan?
the loss of innocence for future pregnancies
During the second pregnancy when it looked like things were going well, we were so happy and hopeful. I don't think we will ever have that kind of joy again with future pregnancies.
the loss of the belief system we didn't even necessarily recognise we held that says "this won't happen to me"
How could I be the one person in 100 who has recurrent miscarriages? I have always been so physically healthy. If this can happen, what else could happen?
the loss of control over our expectations of life
I thought that the big part about having a child was making the decision to have it. When I first started I expected I would have a child within the year. In reality we have been trying for 20 months and have nothing to show for it.
not knowing why the miscarriage happened
I feel so compelled to search for a cause because maybe there is some way to prevent it happening again. If there is a discoverable cause and I make inadequate effort to find it, doesn't that make me somehow culpable for any future losses.
the loss of access to successful womanhood (in our own or others eyes)
This is totally irrational but I feel like a failure as a woman.
the feeling we should hide our loss and not talk about it as others think we are over-reacting
Sometimes I don't tell people because I don't trust that they would understand, sometimes when I do it feels like I'm taking a big risk.
to be unable to do what other women seem easily able to do as a 'natural part of life' and our jealousy and anger of that
there are so many pregnant women around me and women that have had children easily and give it no thought. It feels so unfair, why couldn't I have had that?
dealing with others' inappropriate comments, some with the best of intentions
I haven't had too many of these but those I have had have been painful. They tend to be along the lines of "cheer up", "try again", "it could be worse", "there must have been something wrong with the baby".
the feeling we have let our partner/others down
Once again, irrational but after the second and third miscarriage I had strong feelings that I had failed L and by my body being unable to hold the pregnancy I was culpable for the pain it caused him.
Thursday, November 27, 2008
Tuesday, November 25, 2008
Don't reassure me
Right before I had my d&c the registrar who going to perform it came to talk to me. As you may remember from the post below she told me that the hospital lab was unlikely to do genetic testing on the pregnancy tissue. Because I must have looked upset at this and because she was not offering me what I wanted she tried to comfort me by saying "I know this is very frustrating" (talk about minimising language, try 'devastating') "but 60 to 65% of people in your situation go on to have a baby."
This pissed me off at the time, although I was familiar with these statistics, . After the registrar had left the cubicle, I turned to my mother who was with me and said "how can she think telling someone they have a 60% chance of having a baby is reassuring." It wasn't until I came across this article today, that I realised why it made me so angry. The writer, who suffered three consecutive miscarriages, says:
Yes, there may be some validity to these statistics. Yet, too often doctors seem to use them as an excuse to not help women. When this happens, the underlying message comes across as that the doctors believe that we should find comfort in these statistics and therefore not worry about the fact that we've lost a baby because in all likelihood we won't lose another one. We should not seek treatment for miscarriages because statistics suggest we won't have another one.
For starters, by being recurrent miscarriers, we've often already fallen out of statistical favor. When statistics suggested we shouldn't be in this position in the first place, statistics start to lose their power. After all, if I can be that 1 in 100 women that has three miscarriages in a row, why should I feel comfort that I'll be one of those 6 out of 10 (hardly an overwhelmingly reassuring number) that will carry to term without treatment?
But more importantly, the reason I hate these statistics so much is that they are used to justify an exceedingly cavalier attitude toward miscarriage. Doctors and researchers seem to want us to view pregnancy as a roll of the dice. And it doesn't bother them to just shrug off a failed roll and have us pick up the dice again. We are required to go through a certain number of failed rolls before we can get any help. Yes, even with if we keep rolling the dice, even if they're flawed, we might roll the right number eventually. But for me, each time I get pregnant, that is a child to me. It is not dice.
Most women cannot lose a child with the same nonchalance as we can pick up dice and roll again. Each failed roll represents a little person who will never call us Mommy. It takes great emotional strength to pick up those dice and try again. Each time involves a period of grieving and deep scarring to the heart, sometimes never to heal.
Yes, yes, yes. That is how I felt. The registrar was telling me the hospital lab didn't think it was worth doing testing, which admittedly is expensive, because the results would not change the management of the next pregnancy. In other words, because no explanation has been found for my miscarriages most clinical guidelines say I should not be offered any treatment for my next pregnancy. This is regardless of whether it was found that this latest pregnancy was not caused by a chromosomal abnormality and therefore was not just 'bad luck'. And I shouldn't mind this because its more likely than not that my next pregnancy will work out.
Given the huge emotional and spiritual impact each pregnancy loss has had on me, L and the people who care about us - the days when I could do nothing but sleep, the debilitating depression - shouldn't the medical profession be doing everything it possibly can to try and stop me from losing another pregnancy?
This pissed me off at the time, although I was familiar with these statistics, . After the registrar had left the cubicle, I turned to my mother who was with me and said "how can she think telling someone they have a 60% chance of having a baby is reassuring." It wasn't until I came across this article today, that I realised why it made me so angry. The writer, who suffered three consecutive miscarriages, says:
Yes, there may be some validity to these statistics. Yet, too often doctors seem to use them as an excuse to not help women. When this happens, the underlying message comes across as that the doctors believe that we should find comfort in these statistics and therefore not worry about the fact that we've lost a baby because in all likelihood we won't lose another one. We should not seek treatment for miscarriages because statistics suggest we won't have another one.
For starters, by being recurrent miscarriers, we've often already fallen out of statistical favor. When statistics suggested we shouldn't be in this position in the first place, statistics start to lose their power. After all, if I can be that 1 in 100 women that has three miscarriages in a row, why should I feel comfort that I'll be one of those 6 out of 10 (hardly an overwhelmingly reassuring number) that will carry to term without treatment?
But more importantly, the reason I hate these statistics so much is that they are used to justify an exceedingly cavalier attitude toward miscarriage. Doctors and researchers seem to want us to view pregnancy as a roll of the dice. And it doesn't bother them to just shrug off a failed roll and have us pick up the dice again. We are required to go through a certain number of failed rolls before we can get any help. Yes, even with if we keep rolling the dice, even if they're flawed, we might roll the right number eventually. But for me, each time I get pregnant, that is a child to me. It is not dice.
Most women cannot lose a child with the same nonchalance as we can pick up dice and roll again. Each failed roll represents a little person who will never call us Mommy. It takes great emotional strength to pick up those dice and try again. Each time involves a period of grieving and deep scarring to the heart, sometimes never to heal.
Yes, yes, yes. That is how I felt. The registrar was telling me the hospital lab didn't think it was worth doing testing, which admittedly is expensive, because the results would not change the management of the next pregnancy. In other words, because no explanation has been found for my miscarriages most clinical guidelines say I should not be offered any treatment for my next pregnancy. This is regardless of whether it was found that this latest pregnancy was not caused by a chromosomal abnormality and therefore was not just 'bad luck'. And I shouldn't mind this because its more likely than not that my next pregnancy will work out.
Given the huge emotional and spiritual impact each pregnancy loss has had on me, L and the people who care about us - the days when I could do nothing but sleep, the debilitating depression - shouldn't the medical profession be doing everything it possibly can to try and stop me from losing another pregnancy?
Sunday, November 23, 2008
How validating
After much internet searching I found there is such a thing a a miscarriage blog.
Here's one of a woman who had a child in her early 40s after four miscarriages.
Her blog has a lot of interesting information about celebrity miscarriages, who knew that Courtney Cox had several miscarriages and only had her daughter after having daily heparin injections in her last pregnancy.
Here's one of a woman who had a child in her early 40s after four miscarriages.
Her blog has a lot of interesting information about celebrity miscarriages, who knew that Courtney Cox had several miscarriages and only had her daughter after having daily heparin injections in her last pregnancy.
Thursday, November 20, 2008
Hello! - ever heard of patient-centred care?
This is what happened to me when I had to navigate the medical system. This is long and kind of confusing, so I apologise in advance, but all I can say is imagine having to live it.
It started when I went for my seven week scan - the first scan I'd ever had. It was a Monday. I drank so much water I could barely walk down the street to the radiography clinic.
Radiographer put gel on my belly and ran a small paddle over it, pressing fairly gently but still compromising my overfull bladder a little. I looked up on the screen - I could see the crescent shape of my uterus with a small blurry circle inside it. I thought maybe I could even see the pulsing of the heartbeat. Radiographer measured things over and over - I started to feel nervous when he didn't say anything for so long. Then he told us he couldn't find the fetus. He offered to give me a intra-vaginal ultrasound, which would give a better view. I went the the toilet to empty my bladder and sobbed while I was in there. I had to take off my clothes and put on a sack-like garment for the internal ultrasound. Radiographer couldn't see anything with that either. The last time my hormone levels had been measured they were around 8,000. Radiographer said he would have expected to see a baby at that level. He said that the scan looked like a pregnancy at levels of 200 or 300.
We walked home in a daze. I googled and found what I had was called a "blighted ovum". Then I slept most of the day. The next day I started calling people - I wanted to know what happened next. I called locum GP (who I had been seeing for hormone monitoring), my midwife, and the nurse at my specialists office. Locum GP was the only one that called back that day. She said she had called the radiology lab and talked to Radiologist - the expert in interpreting scans. She said "This isn't bad news" - the Radiologist said it was too early to know whether or not the pregnancy was viable because it wasn't usual to see a heartbeat until the hormone levels were at 11,000. Locum GP said I should book another scan in a weeks time and have another hormone test done to see what was happening. Tendrils of hope inched their way into my heart. Maybe things would still be ok.
The next day I went back to work. My blood test showed my hormone levels had increased from 8,000 to about 19,000 over a five day period. Locum GP left a message saying that she thought it had increased too much to be a blighted ovum. That afternoon specialist nurse called me back. She was casual when she mentioned that my scan was "not reassuring" and cheerfully noted that my hormone levels were still rising.
The next day was a Thursday. Specialist finally called me. He said that because I was not using him as my lead maternity carer for my pregnancy that I was not under his care and he could not treat me. He told me having looked at the scans that he thought "it was very unlikely the pregnancy was viable". I asked him if I could come and see him after the pregnancy was over to get more recurrent miscarriage testing done. He said there was nothing more he could do for me. I was left feeling devastated. My midwife finally called back after I got home, she told me that she was friends with specialist nurse and the only reason Specialist had called me at all was because Locum GP had rung him and had strong words. Midwife minimised what Specialist had said and thought there was still a good chance the pregnancy would be ok. I was pretty doubtful at this point - I had looked up obstetric textbooks online which said it was usual to find a heartbeat when the hormone levels were at 5,000 or more.
The next day I found my hormone levels had risen from 19,000 to 21,000 over two days. I couldn't handle being at work and had to go home at lunchtime. I slept most of the weekend.
On the following Tuesday I went for my next scan. We went through the same drill as last time with the abdominal scan followed by an internal one because. Radiographer still couldn't see a fetus. So it seemed pretty clear to me that it wasn't going to work out. We went for coffee afterwards and tried to make sense of things. If the pregnancy wasn't viable I wanted to have and d&c so I could have chromosomal testing. All the books I bought after the second miscarriage said this was really important to try and work out the underlying cause. But I had found a website called misdiagnosed miscarriage - it said that lots of people were misdiagnosed with blighted ovums and ended up having d&cs when they had a viable pregnancy. It said that 30% of women had a uterus that tipped in the wrong directions (towards the spine instead of away from it) and this made it hard to see the fetus in a scan. Some people had to wait until 12 weeks or later before they could see the fetus in a scan. I was only at 8 weeks - maybe I was one of those women. And yet - it seemed so unlikely. I spent the rest of the day sleeping.
The next day Locum GP was away so I talked to my original GP and told her I wanted to organise a d&c. She said she would talk to the hospital and that I should have another hormone test. This time it had gone from 21,000 to 28,000 over six days - the smallest increase yet.
The next day was Thursday and I talked to the GP again. She told me the hospital would not give me a d&c unless my hormone levels were falling, just in case the pregnancy was still viable. WTF!
The next day was Friday before Labour weekend. I had so wanted to have the d&c done before the long weekend, so I could recover and get back to normal the next week. I got my next test results back that evening at 6pm, my levels had only risen by 50 over two days. GP had left a message, "expect to start miscarrying over the next few days. If you don't miscarry by Tuesday morning go and get another bloodtest and don't eat anything"
I didn't miscarry over the weekend. On Tuesday morning I skipped breakfast and went to get my blood test. Then I went back to work and waited for the results and what I presumed would be a chance to finally go and have the d&c. And waited...... and waited......and got hungrier.... and light headed. I finally got to talk to GP nurse at about noon - my levels had fallen from 28,000 to 25,000 and the hospital couldn't fit me in today. What I needed to do was get on with my day but the next morning I should fast and wait for the hospital to call me.
On Wednesday morning I skipped breakfast and went to work and waited for the hospital to call. And waited..... and waited.... and got hungrier.....and light headed. At noon I finally broke down and called GP nurse to ask her what was going on. GP nurse got back to me in a 20 minutes.
Seems like GP had made a bit of a mistake. The Womens Health Assessment Clinic were actually waiting for me to come in to have a consultation and then they were going to give me an appointment for a d&c. An appointment, what a revolutionary idea. I went off to the hospital and waited for an hour in a waiting room with a two heavily pregnant women. I talked to Clinic Nurse and Clinic Gyn, having to tell both of them my history and the fact I wanted a d&c to have testing done. Clinic Nurse was pretty doubtful about but Clinic Gyn assured me that it was possible. They couldn't book me in for the d&c until the following Monday morning.
On Monday, three weeks after the first scan showing an empty sac, I turned up at the hospital for the d&c. My instructions were to get there at 6.45am. After filling out forms, changing into a cotton hospital gown that tied up at the back, cottom pajama pants, a dressing gown and paper slippers, and waiting around a lot, they gave me a drug to dilate my cervix. It gave me really bad cramps and made me feel nauseous. They walked me down to the surgical ward and got me to take off the dressing gown, slippers and pajama pants and to lie on a bed under a warm flannel sheet. They made me tuck my hair under a paper hairnet. They gave me more forms to fill out.
Surgical nurse, anaesthetist and Gyn registrar all came to talk to me. I reminded Gyn registrar about the testing. She told me that the Lab usually turns down requests for this type of testing because "the result doesn't affect the management of the next pregnancy". I've read a lot of literature on this and I knew it was not necessarily the case. I tried to argue with her but its hard to do this effectively when you're lying on your back with no knickers on and you are the Patient talking to the Doctor. She left the cubicle and I started sobbing - it was definitely up there as one of the most disempowering experiences of my life. Surgical nurse came in and asked why I was crying, I tried to tell him but his English wasn't good enough for him to understand me while I was so distraught. Gyn Registrar came in and told me she had just phoned the lab and they had agreed to do the testing.
I had no time to calm down before they started wheeling my bed away down a corridor to a room where the surgery would take place. Suddenly there were about six people standing around my bed - one of them adjusting my gown for 'easy access', another sticking a pulse monitor on my finger, another inserting a drip into my arm, another placing an oxygen mask over my face. All of them ignoring the fact that I was still crying - not sobbing but a fairly constant stream of tears. The anaesthetic was horribly disorienting for about 15 seconds and then I was out.
I came to in a different room to someone I didn't know calling my name to wake me up. I felt dopy and with a sore throat but basically ok. I was discharged a couple of hours later.
So, that was my journey of three weeks, dealing with over 10 health professionals, telling my story over and over, having referrals messed up, being given conflicting information and generally having experiences that made an already very distressing situation much harder. I still don't have the test results and I don't know whether the Lab actually did the testing in the end. It was all a thoroughly disempowering experience. There was huge variability in the empathy of the health professionals. There were only two or three who I felt like actually cared about me as a person and didn't see me as just another set of symptoms.
This was the first time I had ever had such a close encounter with the medical system. I hope I don't have to again for quite some time.
It started when I went for my seven week scan - the first scan I'd ever had. It was a Monday. I drank so much water I could barely walk down the street to the radiography clinic.
Radiographer put gel on my belly and ran a small paddle over it, pressing fairly gently but still compromising my overfull bladder a little. I looked up on the screen - I could see the crescent shape of my uterus with a small blurry circle inside it. I thought maybe I could even see the pulsing of the heartbeat. Radiographer measured things over and over - I started to feel nervous when he didn't say anything for so long. Then he told us he couldn't find the fetus. He offered to give me a intra-vaginal ultrasound, which would give a better view. I went the the toilet to empty my bladder and sobbed while I was in there. I had to take off my clothes and put on a sack-like garment for the internal ultrasound. Radiographer couldn't see anything with that either. The last time my hormone levels had been measured they were around 8,000. Radiographer said he would have expected to see a baby at that level. He said that the scan looked like a pregnancy at levels of 200 or 300.
We walked home in a daze. I googled and found what I had was called a "blighted ovum". Then I slept most of the day. The next day I started calling people - I wanted to know what happened next. I called locum GP (who I had been seeing for hormone monitoring), my midwife, and the nurse at my specialists office. Locum GP was the only one that called back that day. She said she had called the radiology lab and talked to Radiologist - the expert in interpreting scans. She said "This isn't bad news" - the Radiologist said it was too early to know whether or not the pregnancy was viable because it wasn't usual to see a heartbeat until the hormone levels were at 11,000. Locum GP said I should book another scan in a weeks time and have another hormone test done to see what was happening. Tendrils of hope inched their way into my heart. Maybe things would still be ok.
The next day I went back to work. My blood test showed my hormone levels had increased from 8,000 to about 19,000 over a five day period. Locum GP left a message saying that she thought it had increased too much to be a blighted ovum. That afternoon specialist nurse called me back. She was casual when she mentioned that my scan was "not reassuring" and cheerfully noted that my hormone levels were still rising.
The next day was a Thursday. Specialist finally called me. He said that because I was not using him as my lead maternity carer for my pregnancy that I was not under his care and he could not treat me. He told me having looked at the scans that he thought "it was very unlikely the pregnancy was viable". I asked him if I could come and see him after the pregnancy was over to get more recurrent miscarriage testing done. He said there was nothing more he could do for me. I was left feeling devastated. My midwife finally called back after I got home, she told me that she was friends with specialist nurse and the only reason Specialist had called me at all was because Locum GP had rung him and had strong words. Midwife minimised what Specialist had said and thought there was still a good chance the pregnancy would be ok. I was pretty doubtful at this point - I had looked up obstetric textbooks online which said it was usual to find a heartbeat when the hormone levels were at 5,000 or more.
The next day I found my hormone levels had risen from 19,000 to 21,000 over two days. I couldn't handle being at work and had to go home at lunchtime. I slept most of the weekend.
On the following Tuesday I went for my next scan. We went through the same drill as last time with the abdominal scan followed by an internal one because. Radiographer still couldn't see a fetus. So it seemed pretty clear to me that it wasn't going to work out. We went for coffee afterwards and tried to make sense of things. If the pregnancy wasn't viable I wanted to have and d&c so I could have chromosomal testing. All the books I bought after the second miscarriage said this was really important to try and work out the underlying cause. But I had found a website called misdiagnosed miscarriage - it said that lots of people were misdiagnosed with blighted ovums and ended up having d&cs when they had a viable pregnancy. It said that 30% of women had a uterus that tipped in the wrong directions (towards the spine instead of away from it) and this made it hard to see the fetus in a scan. Some people had to wait until 12 weeks or later before they could see the fetus in a scan. I was only at 8 weeks - maybe I was one of those women. And yet - it seemed so unlikely. I spent the rest of the day sleeping.
The next day Locum GP was away so I talked to my original GP and told her I wanted to organise a d&c. She said she would talk to the hospital and that I should have another hormone test. This time it had gone from 21,000 to 28,000 over six days - the smallest increase yet.
The next day was Thursday and I talked to the GP again. She told me the hospital would not give me a d&c unless my hormone levels were falling, just in case the pregnancy was still viable. WTF!
The next day was Friday before Labour weekend. I had so wanted to have the d&c done before the long weekend, so I could recover and get back to normal the next week. I got my next test results back that evening at 6pm, my levels had only risen by 50 over two days. GP had left a message, "expect to start miscarrying over the next few days. If you don't miscarry by Tuesday morning go and get another bloodtest and don't eat anything"
I didn't miscarry over the weekend. On Tuesday morning I skipped breakfast and went to get my blood test. Then I went back to work and waited for the results and what I presumed would be a chance to finally go and have the d&c. And waited...... and waited......and got hungrier.... and light headed. I finally got to talk to GP nurse at about noon - my levels had fallen from 28,000 to 25,000 and the hospital couldn't fit me in today. What I needed to do was get on with my day but the next morning I should fast and wait for the hospital to call me.
On Wednesday morning I skipped breakfast and went to work and waited for the hospital to call. And waited..... and waited.... and got hungrier.....and light headed. At noon I finally broke down and called GP nurse to ask her what was going on. GP nurse got back to me in a 20 minutes.
Seems like GP had made a bit of a mistake. The Womens Health Assessment Clinic were actually waiting for me to come in to have a consultation and then they were going to give me an appointment for a d&c. An appointment, what a revolutionary idea. I went off to the hospital and waited for an hour in a waiting room with a two heavily pregnant women. I talked to Clinic Nurse and Clinic Gyn, having to tell both of them my history and the fact I wanted a d&c to have testing done. Clinic Nurse was pretty doubtful about but Clinic Gyn assured me that it was possible. They couldn't book me in for the d&c until the following Monday morning.
On Monday, three weeks after the first scan showing an empty sac, I turned up at the hospital for the d&c. My instructions were to get there at 6.45am. After filling out forms, changing into a cotton hospital gown that tied up at the back, cottom pajama pants, a dressing gown and paper slippers, and waiting around a lot, they gave me a drug to dilate my cervix. It gave me really bad cramps and made me feel nauseous. They walked me down to the surgical ward and got me to take off the dressing gown, slippers and pajama pants and to lie on a bed under a warm flannel sheet. They made me tuck my hair under a paper hairnet. They gave me more forms to fill out.
Surgical nurse, anaesthetist and Gyn registrar all came to talk to me. I reminded Gyn registrar about the testing. She told me that the Lab usually turns down requests for this type of testing because "the result doesn't affect the management of the next pregnancy". I've read a lot of literature on this and I knew it was not necessarily the case. I tried to argue with her but its hard to do this effectively when you're lying on your back with no knickers on and you are the Patient talking to the Doctor. She left the cubicle and I started sobbing - it was definitely up there as one of the most disempowering experiences of my life. Surgical nurse came in and asked why I was crying, I tried to tell him but his English wasn't good enough for him to understand me while I was so distraught. Gyn Registrar came in and told me she had just phoned the lab and they had agreed to do the testing.
I had no time to calm down before they started wheeling my bed away down a corridor to a room where the surgery would take place. Suddenly there were about six people standing around my bed - one of them adjusting my gown for 'easy access', another sticking a pulse monitor on my finger, another inserting a drip into my arm, another placing an oxygen mask over my face. All of them ignoring the fact that I was still crying - not sobbing but a fairly constant stream of tears. The anaesthetic was horribly disorienting for about 15 seconds and then I was out.
I came to in a different room to someone I didn't know calling my name to wake me up. I felt dopy and with a sore throat but basically ok. I was discharged a couple of hours later.
So, that was my journey of three weeks, dealing with over 10 health professionals, telling my story over and over, having referrals messed up, being given conflicting information and generally having experiences that made an already very distressing situation much harder. I still don't have the test results and I don't know whether the Lab actually did the testing in the end. It was all a thoroughly disempowering experience. There was huge variability in the empathy of the health professionals. There were only two or three who I felt like actually cared about me as a person and didn't see me as just another set of symptoms.
This was the first time I had ever had such a close encounter with the medical system. I hope I don't have to again for quite some time.
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