IComLeavWe

I have just started on my first IComLeavWe (short for International Comment Leaving Week), a monthly extravaganza of blog reading and commenting and connecting with people across the world.  Very exciting.  

Visit http://www.stirrup-queens.com/2012/03/icomleavwe-april-2012/ if you are interested in finding out more or joining in next month.

Seeing off the dregs of a horrid illness.  Was in bed for half my Easter holiday before discovering I had a strep throat infection, a lovely course of antibiotics and another week off work later and feeling much better but still REALLY tired all the time.

In the UK recently, there has been alot of research into vitamin D and it's suspected that the majority of Scottish people are deficient, turns out I'm one of them.  Just got the blood test results through and my levels are half what they should be!  This is with taking a multi vitamin daily and being a fan of dairy.  Reading up on it, it seems that vitamin D deficiency can cause all sort of bad things (several that I suffer from) including depression and liver problems.  With OC being a liver condition, I'm hopeful that fixing my vitamin D levels and tweaking my other medication (long story I haven't gotten into yet) could bring down my chances of getting OC again.  

Probably not, but the wonder of positive thinking will make me feel better about even trying again and it's something I can actually do something about now rather than just waiting and hoping.

I think it's my best ever reaction to a bad blood test result lol.

90%

My chances of getting Obstetric Cholestasis in a future pregnancy.  I'd conned myself into believing it wouldn't happen again.  Dwelling on the 60 part of the 60-90% chance of recurrence but last week we saw the specialist who told me in no uncertain terms that I should expect to have it again.

I was doing alright, we have been trying for another baby since the start of the year and we had a plan.  A loose trying not to put pressure on ourselves plan, but enough to feel that I was eventually moving forward.  Now I'm not sure where I am.

Can I really put myself through all this again?  I know they will be looking out for me, early screening, the specialist said.  Medication and early induction if it does reoccur.  I'm fortunate to be on the radar of the leading OC specialist in the country, not directly under her care but she will be there to do blood tests etc if my own consultant doesn't take it seriously.  Is it enough?

Can I live with myself if I don't give it another try?

Please Vote

OC Support is up for charity of the month this month and it could mean a £200 cash injection.  To put this in perspective, it's enough money to run the help line for 18months.

If you could spare the two minutes it takes to register and vote it'd be much appreciated.

http://www.easyfundraising.org.uk/blog/cause-of-the-month-shortlist-2011/

Thank you

http://lifepoststillbirth.blogspot.com/2011/06/not-rare-condition.html

Also if you would like a mention on my memorial page please let me know.  It's looking a bit sparse at the moment.

Angel Day

I never contemplated the possibility that my baby might die.  Even when I'd been told about having obstetric cholestasis, it was under control.  There was another couple of weeks before I was in the 'danger zone'.  I was taking the medication and scheduled for induction at 37 weeks.

I was worried about having an actual baby to look after, I was getting really stressed that I hadn't packed my hospital bag yet and about how I didn't have a car seat so I wouldn't be able to get him home.  I'd put off buying things cos I was overwhelmed about what to buy and was worried about spending too much money on stuff.  I was worried about the pain of labour and if I'd be able to breastfeed.  You can imagine the things I worried about but never at any point did not having a live baby.

Even at the point of being at the hospital, one midwife had been concerned about his heart rate, being whisked in for a scan and them saying that his heart didn't sound right.  Even when I asked if I should phone my husband and get him in and they said yes.  Being rushed down to labour ward.  I did think that they'd be taking him out quick smart but that he'd be alive.  I was really worried that he'd be ill, that he wasn't ready to be born, that he'd have to be in SCBU.  My baby sister was born dead at 29 weeks and resuscitated and is a happy healthy 10 year old now.  Babies don't just die.  Otherwise healthy babies don't just die.

I feel naive, that I should have realised that he was dead.  How can I have a dead person inside me and not know?  How could I not realise that I was having contractions for hours?  Even before I left the hospital that morning where I had been for a blood test I was already in labour.  If I had stayed at the hospital or said something I might not be writing this now.  I might be preparing for a first birthday party with baby sick in my hair.  A little ginger monster toddling around and not sleeping for days on end.  I was so worried about not being ready for a small person but I was so much more prepared for that than this.

So now I commemorate his all too short life on the anniversary of his death.

See you in heaven wee man

Not a Rare Condition

I had a comment on a previous post about my obstetric cholestasis(OC), about how rare it is.

This is a very popular misconception.  OC is not a rare condition, it affects 1 in 200 pregnancies.  This may sound like quite a small proportion but when you consider that roughly 1900 babies are born in the UK every day, it turns into quite a lot of people.  When you consider that it is routine to inject babies with vitamin K at birth which can prevent a brain bleed in 1 in 10,000 babies, we are prescribed antenatal vitamins with folic acid to prevent spina bifida which can occur in 1 in 1000 pregnancies, it seems unforgivable that OC, a relatively easy condition to control and manage, has such a low profile.

Having OC does not automatically lead on to a stillbirth, in a properly managed pregnancy the risks of stillbirth are the same as in a non OC pregnancy.  The important bit of that sentence is 'properly managed'.  If you do not know there is a problem you cannot take it to your healthcare professional and you cannot be 'properly managed'.  If your medical team ignore your concerns or are unaware of up to date research in the area, it cannot be 'properly' managed.

All the baby books and sites say that itching in pregnancy is normal.  It's the skin stretching.  It could be a symptom of a very rare condition that causes itching but will subside after birth.  (Lets play down the risks!!!)

The problem with OC is the lack of knowledge about it.  I have heard stories of women who have scratched the skin raw because of this itch and doctors have point blank refused to do the simple blood test that is required to diagnose it. 

They don't know why it causes stillbirth.  The stillborn babies have no detectable problems.  They just stopped living. In a post mortem it comes up as 'unexplained death'.  As they cannot as yet determine why OC causes stillbirth there are some people still (I'm talking consultant obstetricians here) who do not believe it does.

http://www.ocsupport.org.uk/   For further information.

Remember scratching can be more than just an itch.

Finally got the meds on Friday afternoon and took them religiously over the weekend.  

I had a blood test at the hospital on Monday morning then went to Holborn to hand in my assessment at college.  By the time I got there I was in labour and got a taxi right back to the hospital.  I wasn't particularly worried at this point, well I was worried that I wasn't ready for the baby to come cos I didn't have a buggy or car seat to get him home from the hospital, but not for a second did I think there was anything wrong.

I got there and they did a scan and said that his heartbeat wasn't as strong as they would have liked so he would probably have to be born right then.  I phoned my husband and he started his way there but he works at the other side of London so would be at least an hour.  They whisked me down to labour ward and got the theatre ready for an emergency c-section but the consultant did a further scan and concluded that it was too late.  

I don't remember much from that point.  I remember trying to phone my mum and not being able to say it.  I had to get the Dr to tell her.  She got them to bring in her friend who's a midwife at the same hospital and she got there before my husband.  

He tells me that he was hoping that he'd turn up at the hospital to his baby but had a terrible feeling that it had all gone wrong.  

Both our mums managed to get there for the next morning so they saw him before we let him go.

In the immediate aftermath I didn't sleep for 5 days.  Not until I was given sleeping pills.

I don't know how I'm still alive to be honest.  I didn't feel alive for months.  I still don't sometimes but I find that life has a way of finding the chinks and making you feel.  Even if you don't want to.

So what happened

To be honest, no body knows.  It's likely to have been a complication of Obstetric Cholestasis, a liver disease brought on by pregnancy, which can be a cause of stillbirth.

I had an uncomplicated pregnancy until half way through my 35th week.  At a regular antenatal class at the hospital I asked a midwife if I could take or use anti-histamine as I has a bad itch on my arms and legs.  She whisked me up to the labour ward where I had a blood test that confirmed I had OC.  I was told that I should start on medication as soon as possible and that it was likely that my baby would be induced at 37 weeks as there were risks of stillbirth at full term.

I got a steroid injection to help mature his lungs and was sent home to come back about lunch time the next day to pick up my medication and get the second injection.  It was about 4.30 in the morning by this time.

So we went in to get the injection and from there went to get the meds.  We were told to return the next day to collect them as they had to be ordered in.  We sat in the labour ward for 3 hours waiting to talk to someone to see if there was alternative medication or if an extra day would be a big deal or not.  We were told not, so I returned the next day and was again told that they didn't have any in stock and that they would call me when it came in.

http://www.ocsupport.org.uk/

TBC