Not much hope

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.

Results: Unlucky

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.

A story: Mr K's bad mood

When I was in my very early twenties a friend told me a story about someone we knew who I will call Mr K. She explained that he was in a bad mood. He was in a bad mood every month because his wife got upset when she got her period. My friend had to spell it out to me - Mrs K was upset because getting her period meant she was not pregnant. The couple had no children.

I was young, I had just left university and although I was in a relationship with S we were years away from thinking about having children. It was a bit of a revelation to me that to someone trying to get pregnant getting your period wasn't just a minor inconvenience. Even after my friend had explained the situation I don't think I truly understood how upset the couple might have been. They could just try again next month right? And what difference is a month or two anyway? And isn't it easy to get pregnant - isn't that why people use contraception?

At some point (I am afraid I am hazy on time scales) I remember signing a card for Mr and Mrs K and we gave them flowers. Mrs K had miscarried. It took years but eventually they adopted two children. They finally got their family.

At the time I never fully appreciated how hard it must have been for Mr and Mrs K to try for a baby for such a long time, to miscarry, to continue to try and fail, to apply for adoption and to wait to see if they would get any adopted children. I also want to add that I didn't know Mr K very well and never met his wife (just to defend my young self a little for my ignorance).

I haven't thought about Mr and Mrs K in years, but the other day when I got my period I found myself remembering my friend's story about Mrs K being upset at getting her period. Whilst I am sure that even now I do not fully appreciate how difficult Mr and Mrs K's journey to have a family must have been, I do feel that I have much more of an understanding now. And I certainly get how getting your period is upsetting if you are trying to get pregnant.

Image: dan / FreeDigitalPhotos.net

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."

Tests

Image: Ambro / FreeDigitalPhotos.net

Everything felt very bleak after my last miscarriage. I felt like there was no point in trying for another baby because I will just miscarry again. I have a little more hope now. But what would really improve my hope would be tests. I really want tests to determine if there is anything wrong with me or S that is causing my miscarriages. This week I got slightly closer to my goal of getting these tests.

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.

Apathy bubble

I think I am in an apathy bubble. Nothing much is happening and I haven't had opinions or thoughts that are strong enough to burst my bubble and make me write a post for a while. Even my non blogging life is a bit like that. I look in the mirror and think that I need to lose weight but that thought is not enough to make me exercise or stop me eating chocolates and crisps.




Life is just continuing. The second miscarriage has stopped me thinking too much of the future. I am not counting the months until I get pregnant again. I haven't lost hope of a baby one day but just think what is the point in hoping too much when I will just miscarry again? And if I don't well I have that dreaded pPROM to worry about. So I am dealing with it by not thinking about it. Or at least trying not to think about it. Ceasing to think about getting pregnant is impossible, there are far too many reminders for me. For example the other day I walked to work - a simple 20 minute walk - and I passed five heavily pregnant women (and they were not in one big group on their way home after an antenatal class). So forgetting is impossible.

And forgetting or at least thinking less of Orson is also impossible. I just cannot and I think I do not want to. So I still get sad. I am not moping around all the time but waves of sadness happen. I think of him and miss him. A day does not go by when I do not think of him.

I think I am tired. And fed up. I kind if feel like I am in limbo. And I do not know that I will get much better unless I have another baby. I suppose if I cannot I will eventually come to terms with it. And I am sure having another child will not automatically make things feel better, but it will help, I am certain of it.

So for now I am just carrying on and I continue to live in my apathy bubble. Looking after M, going to work, watching mind numbing television... the days and weeks are slipping by.

Maybe this is normal after all

Image from BBC News

Of course it could all be in my imagination but I often feel like people either assume I am back to my old pre-Orson self or if they think I am not then they assume I should be. Yes I act relatively normal and if you ask I probably even say I am okay but I am still not as okay as I used to be even eight months on.

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.

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.

Moods

It has been 3 weeks since my miscarriage and I think I am doing well. But today is a good day. I feel slightly positive about the future.

Isn't it strange how although nothing changes from day to day some days are easier than others?

The day I went back to work I struggled a lot. I found myself almost in tears for most of the day. I kept expecting people would ask why I had been off work and had no idea what I would tell them. Of course lots of my colleagues already knew, but thankfully of those that didn't know nobody asked me outright why I had been away from work, although I did get asked if I was feeling better. To which I just replied "yes."

Straight after the miscarriage I struggled. But I think that is probably normal. I found myself having trouble getting to sleep at night. I thought about Orson a lot. How if he had survived I would never have tried to get pregnant again. Of how I missed him. It didn't help how the operation (erpc) I had was in the same hospital and even the same Theatre where I ended up when I had Orson.

I have had lots of 'feeling sorry for myself' thoughts. Most of these thoughts involve the immense time it takes to conceive and give birth to babies (without having a miscarriage, stillbirth etc). As I have said before it makes me wonder why people ever bother to use birth control as it feels so difficult to have children. I know it isn't the case with everyone. And that hurts. The fact that some people have babies easily, I know I have M and I am very grateful I have him. I have it better than a lot of women who have lost babies but then there are just so many who have had it even better than me...

But I am not going to dwell on these negative feelings today. I WILL be positive. It is hard to be positive about a pregnancy ending in miscarriage, but i will attempt it here for your amusement:

1. Whilst we didn't conceive this latest pregnancy ultra quickly we did conceive. I don't have any infertility problems. I have been pregnant 3 times. We can do it a forth time.

2. I didn't have any bleeding in my latest pregnancy until I started to miscarry. With my pregnancy with Orson bleeding started at just 6 weeks and my consultant thinks that may have ultimately caused my waters to break. So 2/3 of my pregnancies have not had really early bleeding, maybe that will be a trend?

3. The Consultant believes there is no connection between the miscarriage and losing Orson. I was just unlucky. But then combine anything with stillbirth and you are unlucky. Very unlucky.

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.

2011 isn't so great so far.

A few days ago I had a miscarriage, I was 11 weeks pregnant. I will write more on this in another post but I am quite angry with the world right now.

Maybe I should give up hope for a fabulous 2011 and concentrate on 2012 instead?

Time for some statistics

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.

More bleeding and due date confirmed

Had my scan. My official due date is 9th September. Baby is fine. I had more heavy bleeding before the scan. The sonographer said she would expect the other half of my uterus to be doing something, although she did go off to confer with a colleague about it. Bleeding is very common in bicornuate uteruses apparently. I said I had not had it in my previous pregnancy but she didn't have an answer to that. She said to expect more bleeding and that the area of haemorrhage was fairly large.

Did I say that at my appointment before this one the midwife / doctor I spoke to gave me a 50% chance of miscarrying?

Second week of bleeding

More bleeding again this week. It was very heavy this time. I was convinced this time it was a miscarriage. So off I went to the EP Clinic again. They scanned me and found a heartbeat. They also found an area of haemorrhage in the other side of my uterus. I go back in a week for another scan. The bleeding stopped after a few days.

Not a fabulous end to my son's birthday

My son's birthday was Thursday. We had been looking forward to it. All presents etc. ready. We took him to Las Iguanus by bus (he loves buses). Had a lovely meal and were thinking of going to the aquarium. I went to use the bathroom after the meal and discovered I was bleeding. I should have been 6 weeks pregnant....

We went home. I went to the doctors. Took ages to be seen. The doctor was nice. She referred me to the Early Pregnancy Clinic and explained that if this was the start of a miscarriage it would probably be like a heavy period.

So I went to the Early Pregnancy Clinic. Convinced it was a miscarriage. But wow there was a heartbeat on the scan. They thought it was just implantation bleeding. They mentioned my bicornuate uterus and said there was something on the other side of the uterus and want to check it in a couple weeks so I have another scan for then. The bleeding stopped by Monday.