Well I am still here. Now 34 years old. My birthday was just over a week ago. I was 31 when I got pregnant with Orson and 32 when he was born. Seems like such a long time ago.
Nothing much has changed in my life lately. I am still not pregnant. Beginning to think it will never happen. When I lost Orson in July 2010 I found so many blogs of women who had also lost babies - most have either had babies since then or are now pregnant. It is the same with women I have met in forums. It gets very hard hearing so much good news when I don't have any to share myself.
I am trying to be positive. Trying to concentrate on the future. But I cannot escape the fact that my life isn't how I would like it and there is nothing I can do about it. I am trying to concentrate on Christmas. But I remember the last two Christmases. I discovered I was pregnant with Orson around Christmas time two years ago. I found out I was pregnant again about this time last year. At Christmas I had so much hope for this year. 2011 was going to be a very good year. But instead it has been very poor. Two miscarriages and six months since my last one and right now I am still not pregnant. I want to believe 2012 will be a good year but right now I don't have much hope for it.
Showing posts with label stillbirth. Show all posts
Showing posts with label stillbirth. Show all posts
Saturday, 10 December 2011
Monday, 14 November 2011
Results: Unlucky
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| Image: tungphoto / FreeDigitalPhotos.net |
You may recall back in September I wrote a post saying that I had finally been tested for everything recurrent miscarriage related? Well I have finally got the results.
I have to admit I was hoping that they would find something wrong that was easily correctable. Something that explained losing Orson and both miscarriages. Of course no magic explanation exists and I knew that that 50% of the time the results all come back normal even when things clearly are not normal (so the miscarriages keep happening even with normal results).
So I expected my results would probably be normal. I was correct. I'm normal. Both me and S had completely normal chromosome results, my barrage of thrombophilia tests were normal and my antibodies are fine too.
So what does this mean?
Well as you already know a sample of pregancy tissue from my June miscarriage was sent off for tests and they came back positive for Trisomy 22. Trisomy 22 pretty much always results in miscarriage. The Doctor today said that women who have one Trisomy 22 pregnancy have an increased chance of another Trisomy pregnancy, and in my case that would probably be a Trisomy 22 pregnancy. I was reassured that the chance of that happening is low, the chances of a normal pregnancy are much higher. I do like my statistics so asked about the chance she guessed that where the chance is normally 1% with me it is 5%. Although another Trimsomy is most likely to occur with chromosome 22 it could happen on any so early in pregnancy I would be offered all the Trisomy screening tests.
So for now we just keep trying to get pregnant and hope our luck improves. If I get pregnant I need to take asprin (just in case) and take the normal dose of folic acid (I asked about a higher dose and was told it is not needed). I was reassured that I just need to phone the hospital early on in a new pregnancy and they will get me seen and scanned before 12 weeks.
Of course I still have to get pregnant. It has never taken us so long. I am beginning to doubt it will ever happen, but I will save those doubts and worries for another post.
Sunday, 4 September 2011
Left behind
I am going to admit a feeling I am not too proud of. The feeling of being left behind.
A year and 2 months after losing Orson I sometimes feel like I am left behind. Women I have met online who lost babies around the same time as me have gone on to have new babies. And here I am with no new baby and I am not even currently pregnant. Will I ever catch up?
Even the celebrities who lost babies in the last year, such as Lily Allen and Amanda Holden are now pregnant. How do they do it so quickly?
I am afraid the left behind feeling is not a nice one. It is a feeling of jealousy, envy, self pity and sadness all mixed together. Yes I am happy for them. They deserve their rainbows. But I do feel like having a tantrum and screaming that "it's not fair" and "when will it be my turn."
A year and 2 months after losing Orson I sometimes feel like I am left behind. Women I have met online who lost babies around the same time as me have gone on to have new babies. And here I am with no new baby and I am not even currently pregnant. Will I ever catch up?
Even the celebrities who lost babies in the last year, such as Lily Allen and Amanda Holden are now pregnant. How do they do it so quickly?
I am afraid the left behind feeling is not a nice one. It is a feeling of jealousy, envy, self pity and sadness all mixed together. Yes I am happy for them. They deserve their rainbows. But I do feel like having a tantrum and screaming that "it's not fair" and "when will it be my turn."
Friday, 26 August 2011
Tests
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| Image: Ambro / FreeDigitalPhotos.net |
I saw a Consultant this week who explained that the sample of pregnancy tissue sent off after my ERPC had Trisomy 22. This means the pregnancy had three chromosome 22s as opposed to the normal two. He suggested that there is probably only a 1% chance that either myself or S are carriers of Trisomy 22. More likely it is just a random mutation caused when the egg or sperm was created during the dividing process known as meiosis. Normally an egg or a sperm has just one set of each chromosome if something goes wrong during meiosis and a sperm or egg ends up with two copies of a chromosome and that sperm or egg is fertilized the resulting embryo will have three copies of a chromosome instead of two. Trisomies can happen on lots of chromosomes. The most famous Trisomy is Trisomy 21 - it's better known name is Down's Syndrome.
I of course Googled Trismy 22 and found out it accounts for around 3% of first trimester miscarriages. Pregnancies with it rarely progress past the first trimester.
The Consultant explained that everyone has a chance of having a Trisomy pregnancy and that chance increases with age. Because I have had one Trisomy pregnancy now he believes my chance of a second one is increased. He didn't say by how much. And a second Trisomy could occur on any of the chromosomes, including 21. He guessed that at my age (33) the chance of a Down's Syndrome baby is normally around 1 in 600 and now I have had one Trisomy pregnancy is is probably about 1 in 400, so still very small. In any future pregnancy I will be referred to the Foetal Medicine Unit at my hospital at around 11 to 12 weeks to discuss the Trisomy issue.
We are also being referred to the Hospital's Recurrent Miscarriage Clinic. The Consultant agreed we not only need to be tested to see if we are Trisomy 22 carriers but for other miscarriage causes. He said the Clinic will also be able to explain the odds of Trisomies reoccurring more accurately. I am really pleased after all I have wanted tests for ages. But at the same time I am still a little disappointed because it takes so long. We were told to expect a letter giving us an appointment within a month. No idea when the actual appointment will be. The NHS is very, very, very slow.
We asked the Consultant whether it is okay to try for another pregnancy, he agreed it is fine. He tried to end the meeting happily by explaining that it is not unusual for women with my pregnancy history to have healthy babies. I am trying to convince myself I will be one of these women.
Friday, 4 March 2011
Maybe this is normal after all
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| Image from BBC News |
So I was pleased to see this article yesterday. The article reports a study of levels of depression and anxiety for women in and after pregnancy and says,
"The UK/US team found women who had lost a baby in the past experienced significantly higher levels of anxiety and depression during their next pregnancy.
This continued nearly three years after they gave birth to a healthy baby."
It is nice to read an article which suggests that maybe my feelings are normal despite what I might think (rightly or wrongly) people's perceptions of how I should feel are.
I don't think you ever get over losing a baby but I like to think there will become a time when I do not get so upset so often, when maybe I can think about Orson without having to suppress the feeling of wanting to burst into tears. Okay so that is a little dramatic and it is not that bad all of the time but sometimes it still is.
Sunday, 27 February 2011
When to tell people you are pregnant?
No I am definitely NOT pregnant. But Orson's death and my recent early miscarriage made me rethink when I will tell people I am pregnant if I am lucky enough to be pregnant again.
It seems almost traditional to wait until you are past the first trimester to share your good news. That is presumably because the chance of miscarriage drops dramatically after about 12 weeks. And for some reason early miscarriage is treated like some kind of dirty secret that you don't want people to know about.
In my first pregnancy with M I waited a lot longer than 12 weeks to tell people I was pregnant. I was 16 weeks when I told my parents and 21 weeks when I told everybody else. It was almost as if I didn't really believe I could actually be pregnant so didn't want to jinx anything by sharing the news.
With my second pregnancy I didn't tell anybody until I was 19 weeks. I had bleeding and wasn't given the all clear (how ironic) that everything was okay until 19 weeks. By that time everybody had guessed I was pregnant anyway as I showed quite a bit. But then 2 weeks later my waters went...
With my most recent pregnancy ending at 11 weeks I hadn't told anybody. When I miscarried I ended up telling a lot of people. I blogged about it, told close friends, told colleagues at work... So why did I keep it such a secret when I just told everybody when everything went wrong?
My new thoughts on the matter are that if I am lucky enough to get pregnant again I will tell people a bit earlier. I might as well tell those people I would tell if I have a miscarriage so at least I can for once share some happy news even if it is just for a very short time.
When did you tell people you were pregnant? When will you tel them about a future pregnancy? Would live to hear your views on this.
Sunday, 6 February 2011
Reporting of Amanda Holden's stillbirth is a miscarriage in the press
Yesterday evening I heard that Amanda Holden an actress and judge on a talent show here in the UK had given birth to a stillborn son a few days previously. She was seven months pregnant. I recognised Amanda's name but wouldn't have recognised a photo of her and wouldn't have been able to say why she was famous. I am saddened to hear about her loss. I wouldn't want anybody to go through the pain of losing a baby. My thoughts are with her and her family.
The reporting of Amanda Holden's loss really annoyed me. Most of the initial reports from news websites such as BBC News reported that Amanda had suffered a miscarriage. A miscarriage? She was seven months pregnant! How can reporters not realise that a loss of a baby at seven months is not a miscarriage? It is either stillbirth or neonatal death. They really should get their terminology correct. I cannot give you a link to any of the stories using this incorrect terminology because thankfully most have now started to refer to the loss as a stillbirth.
I have seen so many comments on websites from women who have lost babies complaining that the press used the term miscarriage instead of stillbirth. I know it is just a word but it really does make a difference to those of us who have experienced such a loss. Correct reporting helps raise awareness, incorrect reporting makes women like myself who have experienced stillbirth feel like reporters are trying to demean our loss. I am not saying that miscarriages are not painful, and I still believe that there needs to be a change in terminology for late miscarriages. Sadly I feel - and I could be wrong- that many people who have not experienced late miscarriages, stillbirth of neonatal death think of early miscarriages when they hear the word miscarriage. They assume they are common and that the women can just "try again" and will "have better luck next time."
Using the term miscarriage for a loss at seven months feels hurtful, perhaps I am wrong about this, please let me know if I am, but to me if somebody calls the loss of Orson a miscarriage I feel like they do not realise what I went through and what I am still going through. Having given birth at term to M and had a stillbirth at seven months, I know that both experiences of labour are equivalent, but there is one big difference, with the stillbirth you do not have the excitement of knowing you will soon hold your baby. The stillbirth is so much harder and that is an understatement.
So if any reporters read this (I would be shocked if any did) please, please, please check your terminology is correct before you write stories about the loss of a baby in the future. It really will make a difference.
The reporting of Amanda Holden's loss really annoyed me. Most of the initial reports from news websites such as BBC News reported that Amanda had suffered a miscarriage. A miscarriage? She was seven months pregnant! How can reporters not realise that a loss of a baby at seven months is not a miscarriage? It is either stillbirth or neonatal death. They really should get their terminology correct. I cannot give you a link to any of the stories using this incorrect terminology because thankfully most have now started to refer to the loss as a stillbirth.
I have seen so many comments on websites from women who have lost babies complaining that the press used the term miscarriage instead of stillbirth. I know it is just a word but it really does make a difference to those of us who have experienced such a loss. Correct reporting helps raise awareness, incorrect reporting makes women like myself who have experienced stillbirth feel like reporters are trying to demean our loss. I am not saying that miscarriages are not painful, and I still believe that there needs to be a change in terminology for late miscarriages. Sadly I feel - and I could be wrong- that many people who have not experienced late miscarriages, stillbirth of neonatal death think of early miscarriages when they hear the word miscarriage. They assume they are common and that the women can just "try again" and will "have better luck next time."
Using the term miscarriage for a loss at seven months feels hurtful, perhaps I am wrong about this, please let me know if I am, but to me if somebody calls the loss of Orson a miscarriage I feel like they do not realise what I went through and what I am still going through. Having given birth at term to M and had a stillbirth at seven months, I know that both experiences of labour are equivalent, but there is one big difference, with the stillbirth you do not have the excitement of knowing you will soon hold your baby. The stillbirth is so much harder and that is an understatement.
So if any reporters read this (I would be shocked if any did) please, please, please check your terminology is correct before you write stories about the loss of a baby in the future. It really will make a difference.
Monday, 6 December 2010
Time for some statistics
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| image: nuttakit / Freedigitalphotos.net |
It is time for some statistics.
Before go on I should probably point out that I have no idea if any of the statistics I am going to quote are correct. I have added links to the sites that use them but often the sites themselves do not say how they came up with the statistics so who knows if they are correct.
Getting pregnant
To start with here are the statistics nobody tells you when you are young and being warned to always use protection otherwise risk an unplanned pregnancy. Nice and scary when you are impatient and trying to conceive though!
90% of couples in which the woman is under 35 will conceive naturally after one year of actively trying according to the NHS. 30% conceive in the first month and 60% within six months according to Babycentre.
Miscarriage
When you are lucky enough to get that positive pregnancy test these are the next set of statistics to worry about. These stats are curtesy of Babycentre.
What is the chance of miscarriage in first 12 weeks? After a positive pregnancy test, there's about a 20% chance of having an early miscarriage. Late miscarriage (between 12 and 24 weeks in the UK) is less common. It happens in about 1% of pregnancies.
Stillbirth
Now for the statistics that Orson fits into...
In the UK 17 babies are stillborn or die shortly after birth every day (ref: SANDS ) In the UK stillbirth is defined as death of a baby before birth at 24 weeks gestation or above. In England and Wales 5 out of every 1000 babies are stillborn (just over 3000 a year) (ref: NHS )
pPROM
And what about the chance of pPROM? Only around 2% of women experience PPROM.
(ref: RCOG ) Since pPROM is where a women's water breaks before the onset of labour before 37 weeks I would imagine many of the cases will have a positive outcome because the water will break so close to term. I have not seen any statistics on early pPROM but I suspect it is rare. And the chance of having pPROM before 24 weeks and continuing the pregnancy for another 10...? I think it is very rare, after all there must have been a reason the doctors told tell women whose waters break so early they will miscarry within 3 days.
What does it mean?
And what do all these chances mean (apart from that I have been using the Internet too much!)? Well nothing really. Any of you reading this blog of course knows that statistics really don't mean very much. We have all been unlucky with statistics. We can't predict what will happen, we just have to hope and be positive. Still on a bad day it is hard not to be disheartened by these statistics.
Friday, 29 October 2010
Angel baby
I apologise in advance but this post is a moaning one. I do not intend to offend anyone by it, I am sorry if I do. I am just writing down my thoughts as they come without much thought.
Since we lost Orson I have I have looked at forums for women who have gone through stillbirth and other similar loses. To be honest I don't tend to use these forums much anymore. There are so many sad stories and really what can I say that can help? But one thing I quickly noticed was that women often refer to their babies as "angel babies".
I had never heard of the term angel baby before Orson died. I can't imagine ever referring to him as such and wouldn't want others referring to him as such to me. But it seems very normal to do so on some support forums (not all forums, women on SANDs for example rarely seem to do this and not everybody does this on other forums). To me the idea sparks religious imagery something I am not comfortable with. I am happy for others to call their babies angels or whatever else they like.
I know everybody deals with this loss differently and to many religion is a great help. But I am surprised just how many women use this term.
There was an article about it back in June:
http://www.telegraph.co.uk/news/newstopics/religion/7848185/Hospital-stillborn-support-group-banned-from-being-called-angels-as-religious-word-offends.html
A UK hospital had asked a support group who had provided support information to give to parents of stillborn babies to remove the term angel from the literature for fear of offence. Whilst others may see no harm in the term I completely understand the hospital's point of view. Instead of using the term angel baby why not just say baby and refer to the baby's parents as just that - parents?
To me it is almost like people try and sugar coat it, they don't want to say other words like stillbirth or died so say angel instead. Maybe then it doesn't seem so bad? And it is true I dislike these words too. I hated the word stillbirth to start with but am getting used to it. I think the reason I disliked it so much is simply because I disliked what it meant. The term stillbirth especially I disliked for that reason. I always prefer to say that Orson died in labour, that is what happened after all. But I am getting used to saying stillborn. Strange what we get used to.
My final thought on this is simply that maybe some women say angel baby because that is just what everybody else says. The term is everywhere on the internet, maybe because it is trendy or even normal, people use the term without thinking about what it means.
Since we lost Orson I have I have looked at forums for women who have gone through stillbirth and other similar loses. To be honest I don't tend to use these forums much anymore. There are so many sad stories and really what can I say that can help? But one thing I quickly noticed was that women often refer to their babies as "angel babies".
I had never heard of the term angel baby before Orson died. I can't imagine ever referring to him as such and wouldn't want others referring to him as such to me. But it seems very normal to do so on some support forums (not all forums, women on SANDs for example rarely seem to do this and not everybody does this on other forums). To me the idea sparks religious imagery something I am not comfortable with. I am happy for others to call their babies angels or whatever else they like.
I know everybody deals with this loss differently and to many religion is a great help. But I am surprised just how many women use this term.
There was an article about it back in June:
http://www.telegraph.co.uk/news/newstopics/religion/7848185/Hospital-stillborn-support-group-banned-from-being-called-angels-as-religious-word-offends.html
A UK hospital had asked a support group who had provided support information to give to parents of stillborn babies to remove the term angel from the literature for fear of offence. Whilst others may see no harm in the term I completely understand the hospital's point of view. Instead of using the term angel baby why not just say baby and refer to the baby's parents as just that - parents?
To me it is almost like people try and sugar coat it, they don't want to say other words like stillbirth or died so say angel instead. Maybe then it doesn't seem so bad? And it is true I dislike these words too. I hated the word stillbirth to start with but am getting used to it. I think the reason I disliked it so much is simply because I disliked what it meant. The term stillbirth especially I disliked for that reason. I always prefer to say that Orson died in labour, that is what happened after all. But I am getting used to saying stillborn. Strange what we get used to.
My final thought on this is simply that maybe some women say angel baby because that is just what everybody else says. The term is everywhere on the internet, maybe because it is trendy or even normal, people use the term without thinking about what it means.
Tuesday, 19 October 2010
Consultant appointment; causes of pPROM and stillbirth and the future
I finally had my consultant appointment yesterday. This appointment seems to have many names, follow up appointment, 6 week appointment, counselling appointment... but essentially it was to discuss my pregnancy with Orson, where I am now physically and emotionally and then the future.
After the appointment I was of course sad. However I was surprised how well I coped during the actual appointment. Normally you are supposed to have the appointment 6 weeks after your loss. In my case it has been over 3 months. But I was calm during the appointment and even found myself laughing at times. Had I had it 6 weeks after Orson died I think I would have been in tears for most of the time.
I had lots of questions for my Consultant, she said she would put everything we discussed in writing to me but here are her answers as best I remember.
Why did my waters break (pPROM) at 21 weeks?
Obviously the Consultant does not know for sure but in her opinion I had pPROM because of the heavy bleeding I had in the first trimester. I bled at 6, 7 and 8 weeks and was diagnosed with a large area of haemorrhage / haematoma. She thinks that is why my waters broke. Possibly also the Step b that was found in vaginal swabs also played a role.
Why did I go into labour at 31 weeks?
The Consultant was almost certain that the infection I was diagnosed with during labour actually made me go into labour. She does not know what the infection was, possibly Strep b or some other anaerobic infection. I got it simply because my membranes had been ruptured for so long.
My blood cultures came back with a Staph infection however the Consultant thought that may have been contamination from when they took the blood and that it is far more likely that I had a different infection that just wasn't identified or the Strep b that was.
Why did Orson die in labour?
We did not have a post mortem so cannot be certain but the Consultant thinks that Orson had the same infection that I had. She believes this was the cause of his death.
The tests run on the placenta, for example genetic testing were all okay.
Would it have made a difference if I had realised I was in labour sooner (I could have been at the hospital an hour earlier)?
No. The Consultant thinks that if I had been at the hospital an hour earlier they may have been able to do an emergency c section (Orson had a weak heartbeat on an ultrasound scan 10 -15 minutes before a second scan showed there was no heartbeat). Had they been able to resuscitate Orson and assuming his lungs were sufficiently developed she thinks he would have died aged one or two days old from the infection that I had.
Was the risk of stillbirth much lower than the risk of delivery bearing in mind I had so much blood loss etc. the week Orson died?
Yes. If I had been a few more weeks along then I would have had a scheduled delivery. However at 30 - 31 weeks bearing in mind how little amniotic fluid I had after 21 weeks Orson's lungs may not have been sufficiently developed and he needed the extra weeks. He may not have survived even if he didn't have the infection. In most cases where preterm labour occurs at this stage they would have had time to deliver. We were just very unlucky.
What are the chances that pPROM will happen again?
Assuming my pPROM was caused by the bleeding then 1:50. If I get past the first trimester (1:4 chance of miscarriage) then the Consultant thinks it is likely I will get to take a baby home but that it is likely to be premature or early.
When can I try to conceive again?
Anytime. After a couple months physically I would have been ready. However the Consultant stated that women who get pregnant within a year after stillbirth find it emotionally much harder to cope with the pregnancy than those who leave it longer.
What treatment is there for a future pregnancy?
After an early scan I would see the Consultant at around 12 weeks. I would be tested for infection and after these results were known they would decide on treatment. Possibly if I had Strep b still they may give low dose penecilin from around 18 weeks. However this may have other effects and cause other infections.
From 16 weeks I would have vaginal ultrasound scans to check my cervix was okay. I think she might have said every two weeks for a few weeks.
From about 28 weeks I would have growth scans every 4 weeks.
What about the flowing treatments:
-cerclage?
In my case this is unlikely to be of benefit. The Consultant does not think I have a weak cervix and a stitch may introduce infection.
- progesterone?
This is used for women who have had preterm labour. The treatment is going out of favour and is being used less now. However according to the Consultant I do not fit into this category as I showed the opposite tendency - I didn't go into labour for 10 weeks after pPROM.
- vitamins?
Taking multivitamins for pregnant women will not do any harm. The Consultant said when I pressed her on this that she would recommend it and to ensure they include vitamin d and folic acid.
After the appointment I was of course sad. However I was surprised how well I coped during the actual appointment. Normally you are supposed to have the appointment 6 weeks after your loss. In my case it has been over 3 months. But I was calm during the appointment and even found myself laughing at times. Had I had it 6 weeks after Orson died I think I would have been in tears for most of the time.
I had lots of questions for my Consultant, she said she would put everything we discussed in writing to me but here are her answers as best I remember.
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| jscreationzs / FreeDigitalPhotos.net |
Why did my waters break (pPROM) at 21 weeks?
Obviously the Consultant does not know for sure but in her opinion I had pPROM because of the heavy bleeding I had in the first trimester. I bled at 6, 7 and 8 weeks and was diagnosed with a large area of haemorrhage / haematoma. She thinks that is why my waters broke. Possibly also the Step b that was found in vaginal swabs also played a role.
Why did I go into labour at 31 weeks?
The Consultant was almost certain that the infection I was diagnosed with during labour actually made me go into labour. She does not know what the infection was, possibly Strep b or some other anaerobic infection. I got it simply because my membranes had been ruptured for so long.
My blood cultures came back with a Staph infection however the Consultant thought that may have been contamination from when they took the blood and that it is far more likely that I had a different infection that just wasn't identified or the Strep b that was.
Why did Orson die in labour?
We did not have a post mortem so cannot be certain but the Consultant thinks that Orson had the same infection that I had. She believes this was the cause of his death.
The tests run on the placenta, for example genetic testing were all okay.
Would it have made a difference if I had realised I was in labour sooner (I could have been at the hospital an hour earlier)?
No. The Consultant thinks that if I had been at the hospital an hour earlier they may have been able to do an emergency c section (Orson had a weak heartbeat on an ultrasound scan 10 -15 minutes before a second scan showed there was no heartbeat). Had they been able to resuscitate Orson and assuming his lungs were sufficiently developed she thinks he would have died aged one or two days old from the infection that I had.
Was the risk of stillbirth much lower than the risk of delivery bearing in mind I had so much blood loss etc. the week Orson died?
Yes. If I had been a few more weeks along then I would have had a scheduled delivery. However at 30 - 31 weeks bearing in mind how little amniotic fluid I had after 21 weeks Orson's lungs may not have been sufficiently developed and he needed the extra weeks. He may not have survived even if he didn't have the infection. In most cases where preterm labour occurs at this stage they would have had time to deliver. We were just very unlucky.
What are the chances that pPROM will happen again?
Assuming my pPROM was caused by the bleeding then 1:50. If I get past the first trimester (1:4 chance of miscarriage) then the Consultant thinks it is likely I will get to take a baby home but that it is likely to be premature or early.
When can I try to conceive again?
Anytime. After a couple months physically I would have been ready. However the Consultant stated that women who get pregnant within a year after stillbirth find it emotionally much harder to cope with the pregnancy than those who leave it longer.
What treatment is there for a future pregnancy?
After an early scan I would see the Consultant at around 12 weeks. I would be tested for infection and after these results were known they would decide on treatment. Possibly if I had Strep b still they may give low dose penecilin from around 18 weeks. However this may have other effects and cause other infections.
From 16 weeks I would have vaginal ultrasound scans to check my cervix was okay. I think she might have said every two weeks for a few weeks.
From about 28 weeks I would have growth scans every 4 weeks.
What about the flowing treatments:
-cerclage?
In my case this is unlikely to be of benefit. The Consultant does not think I have a weak cervix and a stitch may introduce infection.
- progesterone?
This is used for women who have had preterm labour. The treatment is going out of favour and is being used less now. However according to the Consultant I do not fit into this category as I showed the opposite tendency - I didn't go into labour for 10 weeks after pPROM.
- vitamins?
Taking multivitamins for pregnant women will not do any harm. The Consultant said when I pressed her on this that she would recommend it and to ensure they include vitamin d and folic acid.
Friday, 8 October 2010
UK Baby Loss Awareness Week 9th to 15th October
In the UK 17 babies are stillborn or die shortly after birth every day (ref: SANDs). In the UK stillbirth is defined as death of a baby before birth at 24 weeks gestation or above. In England and Wales 5 out of every 1000 babies are stillborn (just over 3000 a year) (ref: NHS Direct).
15th October is International Babyloss Day and various UK charities are commemorating the week leading up to this day. They are calling it Babyloss Awareness Week.
To commemorate UK Babyloss Awareness Week I wanted to do something with my blog. I have come across lots of blogs by women who have lost babies who have posted on their blog every day for 30 days with a list of posts. Some bloggers have adapted them to reflect their loss. Whilst I think that is a fabulous idea I know I couldn't realistically manage to update this blog daily for 30 consecutive days but thought I might manage 7, one post for every day of Babyloss Awareness Week.
So what to post? I started thinking about it and decided to adapt the original 30 post idea as seen in This girl will never be the same's blog which is:
Day 1 - your favorite song
Day 2 - your favorite movie
Day 3 - your favorite television program
Day 4 - your favorite book
Day 5 - your favorite quote
Day 6 - 20 of your favorite things
Day 7 - a photo that makes you happy
Day 8 - a photo that makes you angry/sad
Day 9 - a photo you took
Day 10 - a photo taken over 10 years ago of you
Day 11 - a photo of you recently
Day 12 - something you are OCD about
Day 13 - a fictional book
Day 14 - a non-fictional book
Day 15 - your dream house
Day 16 - a song that makes you cry (or nearly)
Day 17 - an art piece (drawing, sculpture, painting, etc)
Day 18 - my wedding/future wedding/past wedding
Day 19 - a talent of yours
Day 20 - a hobby of yours
Day 21 - a recipe
Day 22 - a website
Day 23 - a youtube video
Day 24 - where you live
Day 25 - your day, in great detail
Day 26 - your week, in great detail
Day 27 - your worst habit
Day 28 - what's in your handbag/purse
Day 29 - hopes, dreams, and plans for the next 365 days
Day 30 - a dream for the future
But I am going to concentrate on things that have happened since we lost Orson. But I do not want it to be a list of sad things instead I want to write about happy things. So that means superficial trivial things that have made me happy in the last three months. Here's my list:
Day 1- an album I have loved listening to
Day 2- a TV program that I have been able to get lost in whilst watching
Day 3 - a recipe I enjoyed cooking
Day 4 - a book I loved reading
Day 5 - photos that made me smile
Day6 - a purchase that made me happy
Day 7 - a trip away from home that I enjoyed
I start tomorrow. Exactly three months after Orson died.
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| www.babyloss-awareness.org |
To commemorate UK Babyloss Awareness Week I wanted to do something with my blog. I have come across lots of blogs by women who have lost babies who have posted on their blog every day for 30 days with a list of posts. Some bloggers have adapted them to reflect their loss. Whilst I think that is a fabulous idea I know I couldn't realistically manage to update this blog daily for 30 consecutive days but thought I might manage 7, one post for every day of Babyloss Awareness Week.
So what to post? I started thinking about it and decided to adapt the original 30 post idea as seen in This girl will never be the same's blog which is:
Day 1 - your favorite song
Day 2 - your favorite movie
Day 3 - your favorite television program
Day 4 - your favorite book
Day 5 - your favorite quote
Day 6 - 20 of your favorite things
Day 7 - a photo that makes you happy
Day 8 - a photo that makes you angry/sad
Day 9 - a photo you took
Day 10 - a photo taken over 10 years ago of you
Day 11 - a photo of you recently
Day 12 - something you are OCD about
Day 13 - a fictional book
Day 14 - a non-fictional book
Day 15 - your dream house
Day 16 - a song that makes you cry (or nearly)
Day 17 - an art piece (drawing, sculpture, painting, etc)
Day 18 - my wedding/future wedding/past wedding
Day 19 - a talent of yours
Day 20 - a hobby of yours
Day 21 - a recipe
Day 22 - a website
Day 23 - a youtube video
Day 24 - where you live
Day 25 - your day, in great detail
Day 26 - your week, in great detail
Day 27 - your worst habit
Day 28 - what's in your handbag/purse
Day 29 - hopes, dreams, and plans for the next 365 days
Day 30 - a dream for the future
But I am going to concentrate on things that have happened since we lost Orson. But I do not want it to be a list of sad things instead I want to write about happy things. So that means superficial trivial things that have made me happy in the last three months. Here's my list:
Day 1- an album I have loved listening to
Day 2- a TV program that I have been able to get lost in whilst watching
Day 3 - a recipe I enjoyed cooking
Day 4 - a book I loved reading
Day 5 - photos that made me smile
Day6 - a purchase that made me happy
Day 7 - a trip away from home that I enjoyed
I start tomorrow. Exactly three months after Orson died.
Thursday, 9 September 2010
Just complaining
I finally got a letter in the post yesterday giving me an appointment at the hospital to see my Consultant. 18th October. Ages away. I was told after I had Orson it would be 6 weeks after the birth. I hadn't heard anything last week so called the hospital. That wasn't a fun experience as I ended up being transferred twice and had to explain the situation. I just hate having to say my son was stillborn. One very confused women seemed bewildered as to why I was calling and even asked if I was pregnant again. No. Eventually I got through to my Consultant's PA who knew what I was talking about and said she would put a letter in the post.
I just thought I would be seen earlier. I know my Consultant isn't going to be able to say for definite why Orson died or why my waters broke but I would like to hear her opinion. I also want her opinion on how long to wait before trying to conceive again. I have heard some women have been told to wait a year after pPROM. I hope she doesn't recommend that for me. I can't wait a year. I also want to know what treatment I can expect in a future pregnancy. I have heard between 20 to 40% of women pPROM again. It is terrifying.
Today was Orson's due date. I Never thought he would actually arrive today but it is still a sad day. I went to bed very early in the morning, just after midnight and found myself crying. I always imagined he would be early so thought I would have a baby who was two or three weeks old right now.
I intend to keep busy today, trying not to dwell on the sadness I feel. So off to lunch with M and a friend.
I just thought I would be seen earlier. I know my Consultant isn't going to be able to say for definite why Orson died or why my waters broke but I would like to hear her opinion. I also want her opinion on how long to wait before trying to conceive again. I have heard some women have been told to wait a year after pPROM. I hope she doesn't recommend that for me. I can't wait a year. I also want to know what treatment I can expect in a future pregnancy. I have heard between 20 to 40% of women pPROM again. It is terrifying.
Today was Orson's due date. I Never thought he would actually arrive today but it is still a sad day. I went to bed very early in the morning, just after midnight and found myself crying. I always imagined he would be early so thought I would have a baby who was two or three weeks old right now.
I intend to keep busy today, trying not to dwell on the sadness I feel. So off to lunch with M and a friend.
Friday, 16 July 2010
Orson's birth... and death
This is the story of Orson's birth.
Thursday had been a good day. No bleeding and Orson moved a lot. I woke up at 7:30 am. Friday and again Orson moved. Since I was tired I went back to sleep. At 9:30 I woke up with a mild ache low in my pelvis. It lasted 1 or 2 seconds. Half an hour later and I felt another. I had a routine appointment at midday, thought I felt Orson move and was convinced this wasn't labour. It didn't feel like the contractions I had felt with my first son. My bump did not get at all tight.
So I carried on as normal. My partner took our son to nursery and I got ready. A few minutes before I was about to leave I noticed the pain was worse and more frequent. But still it didn't feel like a contraction and the pain was mild.
When I got to the hospital I asked to be seen immediately. I asked for paracetamol. Still not realising I was in labour. They scanned me and found a heartbeat and absolutely no fluid. Orson was still transverse possibly a bit oblique. During the 5 minute scan the pain intensified dramatically and came every 2 minutes. The midwife realised I was in labour. I was shocked it felt nothing like with my first son.
The midwife left me and my partner in the scan room and went to call the labour and delivery ward. She was gone less than 5 minutes. By the time she came back the pain was almost unbearable and when I tried to move I felt very sick and dizzy. They got me a wheelchair and took me down to the new ward in the lift. By now I was screaming and begging them to help the pain stop. Unlike with my first son it just did not ease it felt constant then occasionally got worse.
They scanned me again. By now I was surrounded by doctors and midwives. I didn't notice who scanned me first, then a doctor scanned me and I saw her whisper no heartbeat to my consultant. My consultant scanned me, before she could start I said "you can't find a heartbeat can you?" she said no and said she was going to scan me thoroughly and would be very quiet while she did. She found nothing. Orson had died in the 10 minutes or so it took me to get to the labour and delivery ward.
It must have been about midday. They checked and I was 8cm dilated. They gave me pethidine and then they explained that Orson was still in a bad position for delivery but they were going to try their best to let me deliver vaginally as a c-secton would have a bigger impact on me and could effect future pregnancies.
An anaesthetist gave me an epidural. It was so hard to stay still for that whilst I was in so much pain. But when it finally worked it was great.
They put a cannula in each hand. They started me on IV antibiotics as they decided I looked very ill. They took blood samples etc.
I didn't cry. I think I must have been in shock. I was just numb. By 5:30 they checked me again. I was fully dilated. Orson's arm had prolapsed. He was still in a vary bad position. They scanned me again. A consultant told me that he would try and move Orson but that it would be very difficult because my uterus had never grown any bigger than him because I had never had enough fluid. My bicornuate uterus made it even harder. I was told if they couldn't move him I would need a c-section.
They prepared me for a c-section. S put on his blue scrubs. I was told the risk of a c-section and signed the consent form. The only risk I recall was one which led to hysterectomy. I just remember thinking, no I want another child, please no.
It was about now that I realised I felt very cold and was shaking uncontrollably. They took my temperature, it was about 38.7 degrees C. They put me on a paracetamol drip. They took more blood samples and cultures before they wheeled me to theatre.
I have never been so scared as I was in theatre. They gave me a spinal which meant I was completely numb from my arms down and had a big sheet up to stop me seeing anything. S sat one side of my head the anaesthetist the other. So so scary.
It was half six when the Consultant told me he had delivered Orson. He was breech. He then had to manually remove the placenta.
S saw Orson first whilst still in theatre. I chose to wait. I didn't want him far away though. Whilst they wheeled me to my room they pushed Orson in his little cot.
He looked big to me. Not like the small premature baby I had expected. He was the same weight as the average 34 week old premature baby, 4 lb 11 oz. I kept him in my room until about 3 or 4 the next day. The midwives lifted him out of his cot three times for me to hold. One unwrapped his blanket to show me his foot and hand. So small but perfect. It was so hard to say goodbye. To tell him I loved him and that I was sorry. My partner told me to hold him as long as I wanted but I knew they had to take him away because I didn't ever want to let him go.
I had to stay in hospital another two nights. The first night I couldn't leave the bed, the spinal took ages to wear off and I had a catheter. In the morning I felt dizzy and sick. My blood pressure was very low so they gave me saline. I was on IV antibiotics until the night before I was discharged.
My stomach hurt loads because they had manipulated me so much. I also tore and had stitches.
Leaving hospital without Orson was heartbreaking. I hate how I can't look after him anymore.
They told me I had a staph infection in hospital. I was on oral antibiotics when I came out for a week. Now I'm just on iron tablets. The combination of birth and masses of blood tests they ran on me made me anaemic.
My stomach doesn't ache any more. It just hurts low down in my pelvis if it's pressed. I am incredibly sore where I tore and everywhere else down there. It is very painful using the toilet and walking around for very long. Much worse than with my first son. They reckon it is because it was so difficult to manipulate Orson my bladder and everything else down there got bruised. I was told to give it another two weeks and then to see my GP if the pain is no better.
We have arranged Orson's funeral for the 30th July. I should have been 34 weeks by then...
I said yesterday that I get sad and think of Orson every hour but as I said it I realised it is more than that, it's just that I only lose it and actually cry once an hour. Orson and the sadness is always there. I wouldn't want anybody to go through this. To not be able to hear your baby cry, to see him move, to tell him you love him is truly awful.
Thursday had been a good day. No bleeding and Orson moved a lot. I woke up at 7:30 am. Friday and again Orson moved. Since I was tired I went back to sleep. At 9:30 I woke up with a mild ache low in my pelvis. It lasted 1 or 2 seconds. Half an hour later and I felt another. I had a routine appointment at midday, thought I felt Orson move and was convinced this wasn't labour. It didn't feel like the contractions I had felt with my first son. My bump did not get at all tight.
So I carried on as normal. My partner took our son to nursery and I got ready. A few minutes before I was about to leave I noticed the pain was worse and more frequent. But still it didn't feel like a contraction and the pain was mild.
When I got to the hospital I asked to be seen immediately. I asked for paracetamol. Still not realising I was in labour. They scanned me and found a heartbeat and absolutely no fluid. Orson was still transverse possibly a bit oblique. During the 5 minute scan the pain intensified dramatically and came every 2 minutes. The midwife realised I was in labour. I was shocked it felt nothing like with my first son.
The midwife left me and my partner in the scan room and went to call the labour and delivery ward. She was gone less than 5 minutes. By the time she came back the pain was almost unbearable and when I tried to move I felt very sick and dizzy. They got me a wheelchair and took me down to the new ward in the lift. By now I was screaming and begging them to help the pain stop. Unlike with my first son it just did not ease it felt constant then occasionally got worse.
They scanned me again. By now I was surrounded by doctors and midwives. I didn't notice who scanned me first, then a doctor scanned me and I saw her whisper no heartbeat to my consultant. My consultant scanned me, before she could start I said "you can't find a heartbeat can you?" she said no and said she was going to scan me thoroughly and would be very quiet while she did. She found nothing. Orson had died in the 10 minutes or so it took me to get to the labour and delivery ward.
It must have been about midday. They checked and I was 8cm dilated. They gave me pethidine and then they explained that Orson was still in a bad position for delivery but they were going to try their best to let me deliver vaginally as a c-secton would have a bigger impact on me and could effect future pregnancies.
An anaesthetist gave me an epidural. It was so hard to stay still for that whilst I was in so much pain. But when it finally worked it was great.
They put a cannula in each hand. They started me on IV antibiotics as they decided I looked very ill. They took blood samples etc.
I didn't cry. I think I must have been in shock. I was just numb. By 5:30 they checked me again. I was fully dilated. Orson's arm had prolapsed. He was still in a vary bad position. They scanned me again. A consultant told me that he would try and move Orson but that it would be very difficult because my uterus had never grown any bigger than him because I had never had enough fluid. My bicornuate uterus made it even harder. I was told if they couldn't move him I would need a c-section.
They prepared me for a c-section. S put on his blue scrubs. I was told the risk of a c-section and signed the consent form. The only risk I recall was one which led to hysterectomy. I just remember thinking, no I want another child, please no.
It was about now that I realised I felt very cold and was shaking uncontrollably. They took my temperature, it was about 38.7 degrees C. They put me on a paracetamol drip. They took more blood samples and cultures before they wheeled me to theatre.
I have never been so scared as I was in theatre. They gave me a spinal which meant I was completely numb from my arms down and had a big sheet up to stop me seeing anything. S sat one side of my head the anaesthetist the other. So so scary.
It was half six when the Consultant told me he had delivered Orson. He was breech. He then had to manually remove the placenta.
S saw Orson first whilst still in theatre. I chose to wait. I didn't want him far away though. Whilst they wheeled me to my room they pushed Orson in his little cot.
He looked big to me. Not like the small premature baby I had expected. He was the same weight as the average 34 week old premature baby, 4 lb 11 oz. I kept him in my room until about 3 or 4 the next day. The midwives lifted him out of his cot three times for me to hold. One unwrapped his blanket to show me his foot and hand. So small but perfect. It was so hard to say goodbye. To tell him I loved him and that I was sorry. My partner told me to hold him as long as I wanted but I knew they had to take him away because I didn't ever want to let him go.
I had to stay in hospital another two nights. The first night I couldn't leave the bed, the spinal took ages to wear off and I had a catheter. In the morning I felt dizzy and sick. My blood pressure was very low so they gave me saline. I was on IV antibiotics until the night before I was discharged.
My stomach hurt loads because they had manipulated me so much. I also tore and had stitches.
Leaving hospital without Orson was heartbreaking. I hate how I can't look after him anymore.
They told me I had a staph infection in hospital. I was on oral antibiotics when I came out for a week. Now I'm just on iron tablets. The combination of birth and masses of blood tests they ran on me made me anaemic.
My stomach doesn't ache any more. It just hurts low down in my pelvis if it's pressed. I am incredibly sore where I tore and everywhere else down there. It is very painful using the toilet and walking around for very long. Much worse than with my first son. They reckon it is because it was so difficult to manipulate Orson my bladder and everything else down there got bruised. I was told to give it another two weeks and then to see my GP if the pain is no better.
We have arranged Orson's funeral for the 30th July. I should have been 34 weeks by then...
I said yesterday that I get sad and think of Orson every hour but as I said it I realised it is more than that, it's just that I only lose it and actually cry once an hour. Orson and the sadness is always there. I wouldn't want anybody to go through this. To not be able to hear your baby cry, to see him move, to tell him you love him is truly awful.
Saturday, 10 July 2010
Email sent on 10th July informing a work colleague of Orson's death
Copy of an e-mail sent to a work colleague shortly after I had Orson, I was still in hospital at the time.
Hi XXX
Our son, Orson, died on friday during labour.
I'm still in hospital being treated for infection. I hope to go home
later today.
It's very very hard to cope at the moment, but that is a really
inadequate way to describe how bad it is.
Orson looked perfect and weighed 4lb 11oz.
I will write more when i'm home.
Please let everyone in work know.
Loumary
xx
Hi XXX
Our son, Orson, died on friday during labour.
I'm still in hospital being treated for infection. I hope to go home
later today.
It's very very hard to cope at the moment, but that is a really
inadequate way to describe how bad it is.
Orson looked perfect and weighed 4lb 11oz.
I will write more when i'm home.
Please let everyone in work know.
Loumary
xx
Tuesday, 29 June 2010
Need to be more positive (29 weeks pregnant and no amniotic fluid left)
I'm okay, not having a positive day today though... Hopefully because I'm tired and tomorrow will be better.
I'll be 30 weeks on Thursday. I went to the hospital for tests etc today. My blood tests still show no sign of infection which is great. No idea on my swab results the staff are constantly failing to get the computer system to show them the results, but hopefully they are ok. The baby's heart trace was ok considering his situation.
Had a growth scan and the baby has grown as he should, he's following the 50th percentile nicely and they estimate he weighs 3oz something. Sadly the fluid level around him is worse. There is now no fluid at all left. He still makes it but it just leaks out immediately. Apparently that means higher chances of physical problems (his feet are already turning inwards), that doesn't concern me too much as I know they can do a lot to correct most problems like that. What does really scare me is cord compression, because there is no fluid the cord is more likely to get compressed and the baby is more likely to be deprived of oxygen... I've heard lots of horror stories about stillbirth related to this.
The Consultant today reckoned the risk of problems if the baby is delivered now is higher than the risk of problems if I continue as I am. So that's what I'm doing (not that I have any choice!). If nothing changes I go to have blood tests and a trace again Friday. I then see my consultant (not the one I saw today) again Monday. Not sure why I think just because that is the only appointment she has free until August which is a bit late for me probably! The next growth scan is in two weeks.
So things are ok. Got to make an effort to be positive and hope for the best. Hopefully everything will be ok for the next few weeks.
I'll be 30 weeks on Thursday. I went to the hospital for tests etc today. My blood tests still show no sign of infection which is great. No idea on my swab results the staff are constantly failing to get the computer system to show them the results, but hopefully they are ok. The baby's heart trace was ok considering his situation.
Had a growth scan and the baby has grown as he should, he's following the 50th percentile nicely and they estimate he weighs 3oz something. Sadly the fluid level around him is worse. There is now no fluid at all left. He still makes it but it just leaks out immediately. Apparently that means higher chances of physical problems (his feet are already turning inwards), that doesn't concern me too much as I know they can do a lot to correct most problems like that. What does really scare me is cord compression, because there is no fluid the cord is more likely to get compressed and the baby is more likely to be deprived of oxygen... I've heard lots of horror stories about stillbirth related to this.
The Consultant today reckoned the risk of problems if the baby is delivered now is higher than the risk of problems if I continue as I am. So that's what I'm doing (not that I have any choice!). If nothing changes I go to have blood tests and a trace again Friday. I then see my consultant (not the one I saw today) again Monday. Not sure why I think just because that is the only appointment she has free until August which is a bit late for me probably! The next growth scan is in two weeks.
So things are ok. Got to make an effort to be positive and hope for the best. Hopefully everything will be ok for the next few weeks.
Sunday, 13 June 2010
Worried about stillbirth
I'm out on the balcony wondering about the future. M is asleep downstairs and S is working downstairs.
I haven't felt much movement from the baby yet today. Had to do my trick of lying on the bed downstairs and concentrating trying to feel him move.
Just felt another gushy leak of fluid but it's been clear today and no pain.
Been wondering...
I see the consultant tomorrow and get a growth scan. What should I ask?
1. Bleeding. Why? When should I be concerned?
2. Pain. As above.
3. More Braxton hicks contractions should I worry?
4. Transverse lie still?
5. Will they induce if I get far enough along? How far? 34 weeks?
6. Foetal heart monitoring? How often?
7. Pressure on cord?
Bet they can't answer my questions.
Keep finding myself reading about stillbirth etc. No point what will happen will happen. Been worried about a prolapsed cord and cord compression etc, been looking on the Internet. No point there is nothing I can do about it.
I just wish I knew it was all going to be okay.
I haven't felt much movement from the baby yet today. Had to do my trick of lying on the bed downstairs and concentrating trying to feel him move.
Just felt another gushy leak of fluid but it's been clear today and no pain.
Been wondering...
I see the consultant tomorrow and get a growth scan. What should I ask?
1. Bleeding. Why? When should I be concerned?
2. Pain. As above.
3. More Braxton hicks contractions should I worry?
4. Transverse lie still?
5. Will they induce if I get far enough along? How far? 34 weeks?
6. Foetal heart monitoring? How often?
7. Pressure on cord?
Bet they can't answer my questions.
Keep finding myself reading about stillbirth etc. No point what will happen will happen. Been worried about a prolapsed cord and cord compression etc, been looking on the Internet. No point there is nothing I can do about it.
I just wish I knew it was all going to be okay.
 |
| My view from our balcony. |
Tuesday, 8 June 2010
Ramblings of a pPROM Mum
Yesterday my main concern was lack of movements from the baby. Felt some movement but not a lot. Not regular repetitive kicks etc. I worry I won't pick up lack of movement because of distress in time for anyone to help him. I feel no pain though. That is good. The day before yesterday I had achy period like pain from lunchtime until bedtime. Tried sleeping and paracetamol but the pain continued. I did feel the baby move more that day so maybe there is a correlation there?
M is in Nursery. Love him loads. He is amazing, so precious. This pregnancy makes me think I was very lucky to have him.
I am feeling okay today.
Hospital appointment this morning. They did a scan. Could only find 2 pockets of amniotic fluid, but at least there was some. Should be 4 pockets.... Took blood, did swab. All results from last time are okay. No strep b or Candida - yet. I have had both of these since my waters broke. I had my first trace, baby's heart was okay roughly 140 beats per minute. Felt him move a bit today.
M is in Nursery. Love him loads. He is amazing, so precious. This pregnancy makes me think I was very lucky to have him.
I am feeling okay today.
Hospital appointment this morning. They did a scan. Could only find 2 pockets of amniotic fluid, but at least there was some. Should be 4 pockets.... Took blood, did swab. All results from last time are okay. No strep b or Candida - yet. I have had both of these since my waters broke. I had my first trace, baby's heart was okay roughly 140 beats per minute. Felt him move a bit today.
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