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.
Friday, 29 October 2010
Wednesday, 27 October 2010
We all wear masks
I have mentioned the Faces of Loss, Faces of Hope website a few times now. This month they ask women who have experienced a loss through miscarriage, stillbirth or infant loss to post on their blogs answers to the following question: As Halloween approaches and you start thinking about costumes, are there (figurative) "masks" you sometimes put on?
I think everybody where's a mask on occasions even if they haven't been through the loss of a baby. Of course I am talking figuratively and not an actual mask, think of your reply to the question "how are you?" and not the masks warn in the film Eyes Wide Shut! From now on in this post when I say mask I mean the figurative mask.
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| Image: graur codrin / FreeDigitalPhotos.net |
I think everybody where's a mask on occasions even if they haven't been through the loss of a baby. Of course I am talking figuratively and not an actual mask, think of your reply to the question "how are you?" and not the masks warn in the film Eyes Wide Shut! From now on in this post when I say mask I mean the figurative mask.
Think you have never warn a mask? Have you never been at a job interview and warn a mask which shows you are the best person for the job (even though you secretly think there just might be someone out their who could do it better)? Have you never been on a date and warn a mask that shows you really are the best girlfriend or boyfriend anyone could want?
When I think about it everybody wears masks to try and be what they perceive others want them to be. And to enable themselves to fit into this world and function effectively. My most frequently warn mask is the one which allows me to show the world everything is fine, I am just as if I never got pregnant and lost my baby. It is one which is hard but brittle and thin. It shatters really easily. However as time goes on it is getting thicker and more durable. It takes a lot more to make me cry now.
Of course this suggests that I am living a kind of fake life pretending everything is fine when it is not. But that is not true. Whilst my mask is more effective now I also need it a lot less. I am genuinely happy a lot of the time. There is an awful lot to be happy about. Almost for months after we lost Orson I can truthfully reply "okay" to the question "how are you?" a lot of the time.
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.
Sunday, 17 October 2010
Natalie
I have often wondered and continue to wonder what would have happened if Orson had been born alive. I know that he might not have made it and there would have been possibly a long struggle ahead of us. I have followed blogs of women whose babies survived as well as those of women whose babies didn't make it.
Today I learnt the sad news that a pPROM baby whose story I was following on a blog died. Natalie was born April 21st 2010 at 33 weeks gestation. She was in hospital her whole life and had to have surgery many times. Read her story on:
http://babygirltee-jennifer.blogspot.com
It is so very sad that after an almost six month fight poor Natalie didn't get to go home.
Friday, 15 October 2010
Day 7 - A trip away from home that I enjoyed
Today is International Pregnancy and Baby Loss Awareness Day, today is the last day of Baby Loss Awareness Week across the UK.
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).
All this week to commemorate UK Babyloss Awareness Week I have been posting about trivial things that have made me happy since I lost Orson three months ago. Today the subject is a trip away from home that I have enjoyed.
We went to Birmingham with M not long after we lost Orson. We went for one night and stayed in a hotel. I had never been there before. To be honest we were not expecting anything much. We just wanted one night away somewhere.
We got the train (to satisfy M's love of trains and making life simpler for us - no driving or worrying about parking). We looked round the shops, went out for food. Did very little. I was still struggling to cope.
The second day we went to the City Museum and by chance they had an exhibit on about dinosaurs. There were lots of animatronics involved. M loved it. He was a little scared of the dinosaurs at first but had great fun. I had loads of fun watching him. Seeing him happy made me happy.
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).
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| www.babyloss-awareness.org |
We went to Birmingham with M not long after we lost Orson. We went for one night and stayed in a hotel. I had never been there before. To be honest we were not expecting anything much. We just wanted one night away somewhere.
We got the train (to satisfy M's love of trains and making life simpler for us - no driving or worrying about parking). We looked round the shops, went out for food. Did very little. I was still struggling to cope.
The second day we went to the City Museum and by chance they had an exhibit on about dinosaurs. There were lots of animatronics involved. M loved it. He was a little scared of the dinosaurs at first but had great fun. I had loads of fun watching him. Seeing him happy made me happy.
Thursday, 14 October 2010
Day 6 - A purchase that made me happy
All this week I am writing blogs about happy but trivial things. To see why please read my post from 8th October 2010.
Today my topic is a purchase that made me happy. I pick a toy musical keyboard. Bought a few days ago for M. We had a kind of birthday party without an actual real birthday to celebrate (why not celebrate made up birthdays?). The toy keyboard was his present.
We has a kiddies birthday party with lots of food on cocktail sticks, jelly, cake etc. We wore silly hats and had fun music on. M got to drink juice whilst me and S had sparkling wine. We all had a lot of fun.
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| Image: graur razvan ionut / FreeDigitalPhotos.net |
Today my topic is a purchase that made me happy. I pick a toy musical keyboard. Bought a few days ago for M. We had a kind of birthday party without an actual real birthday to celebrate (why not celebrate made up birthdays?). The toy keyboard was his present.
We has a kiddies birthday party with lots of food on cocktail sticks, jelly, cake etc. We wore silly hats and had fun music on. M got to drink juice whilst me and S had sparkling wine. We all had a lot of fun.
Wednesday, 13 October 2010
Day 5 - Photos that made me smile
Every day this week I am blogging about happy trivial things. To see why look at my post on 8th October 2010. The topic today is photos that made me smile. I have picked two photos taken in the last couple months by M. We recently bought him his first camera. Here are two of his recent photos.
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| M's dinner, photo taken by M. |
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| M's feet, photo taken by M. |
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