If necessary use the emergency exit

I am happy to report that baby’s re-scan went well today. Spine and kidneys all present and correct. Baby was asleep when the scan started, but awake by the time it was over (well, so would you be if you were being prodded and poked and blasted with sound waves). Growth is on track, and he or she (we haven’t found out) seems perfect – and looks like a real baby (there is no reason for me to be surprised by this, but somehow I still am).

The less good news is that the placenta is really very low, and, although many low placentas do move up in later pregnancy, it seems that mine has quite a long way to go – 7 centimeters. We saw the consultant and he has officially given me the diagnosis of placenta praevia (http://www.nhs.uk/ipgmedia/National/Royal%20College%20of%20Obstetricians%20and%20Gynaecologists/assets/Alow-lyingplacentaafter20weeksknwonasplacentapraevia.pdf). He is already talking about a planned c-section at 36 weeks or so, which brings the EDD forward to the week of the 27th May. That’s almost a whole month! (!!!!!) I’m not too worried about that, per se, because it’s pretty much term, and they can give me injections to help accelerate the development of the lungs etc., so the baby will be able to manage. To be honest, I just want it to be OK, so I’ll take whatever advice I need to take to achieve that. I don’t think I’ll feel any ‘less of a woman’ if it ends up coming out through the sun roof. It’s not about me, it’s about getting this baby healthily into the world, whatever it takes. I’d rather avoid hospital scares along the way, but I’ll do what I need to do to achieve that objective.

We’ll be scanned again at 32 weeks to see what’s happening and I expect the final decision will be made then. Assuming, that is, that nothing untoward happens in the mean time; we are on alert to go straight to the Labour Ward if there is any spotting of any kind, where I’ll me monitored for 48 hours to check it isn’t a more serious bleed. But hopefully nothing like that will happen. (Please don’t let anything like that happen!).

Apparently, the risk factors (that could possibly affect me – given that I am not a smoker or a cocaine user, I can rule those out as possible causes!) are age (a factor at 38) and previous c-sections (no) and ERPCs (4 + 2 hysteroscopies, including the surgical removal of a septum). Has my surgical history caused this placenta to mis-grow? Even if it has, there’s nothing I can do about it now.

Wish us luck for an incident free path through the next 3-4 months, and getting baby safely into the world in either June or May. Whatever it takes.

Practical Matters – What Happens at St Mary’s and Coventry RMC Clinics?

This post is intended to help ladies (and their partners) get an idea of what to expect if you have been referred for testing at these hospitals. I’m writing for those who have miscarried for a third (or more) time, as you are now officially sufferers of Recurrent Miscarriage, or Repeated Pregnancy Loss. You are probably in a state of grief and disbelief that you have miscarried again, at the same time as being determined to find some answers. You may have a helpful and supportive GP; you may not. Even if they are supportive, you will probably need to chase things up a bit, because although there are a lot of brilliant things about the NHS, sadly admin isn’t always one of them. See this post for more information: https://justonemoretimeagain.wordpress.com/2014/07/04/full-time-administrative-assistant-required/

These are my experience of these two hospitals. Your experiences might be slightly different, but hopefully this will be helpful to you. If you are able to do so, get your local hospital (wherever you had your last ERPC, if you had one), to send away the tissue samples from that procedure, or any tissues you have been able to recover, for genetic testing. If you take them to the hospital yourself, DO NOT allow them to be stored in formaldehyde, as this will make genetic testing impossible. This advice is from Prof Lesley Regan’s 2001 book, which you may find helpful: http://www.amazon.co.uk/Miscarriage-What-every-Woman-needs/dp/0752837575/ref=sr_1_3?s=books&ie=UTF8&qid=1409471375&sr=1-3&keywords=lesley+regan

A note on genetic testing; you may be asked to sign a parental consent form. This may be upsetting, but it is necessary, so it is good to be prepared to be asked to do so. Results from these tests take about 6 weeks and the consultant will normally phone you to tell you the results and follow it up with a letter. This information is very useful in determining what has happened in your most recent loss, and what might be able to be done to help you carry a baby successfully to term in the future. The NHS offers this kind of testing after three miscarriages, although, if there is a reason to believe that there may be a genetic issue in your or your partner’s family (many people live perfectly normally with a balanced translocation of chromosomes: http://miscarriage.about.com/od/twoormoremiscarriages/p/balancedtranslo.htm), then you might be able to get these tests earlier. Some hospitals will let you pay for these tests after 2 miscarriages, others will fob you off (I was told that they ‘didn’t have the right container’ after my second miscarriage, queue hysterical woman in backless gown – I always regretted not fighting harder for that one). You may be able to get your local services to order karyotyping for you and your partner, which will establish whether either of you have a balanced translocation that you may be passing on. Again, the results take about 6 weeks. All of this information will be very useful in determining your treatment plan for your 4th ‘try’, and your RMC clinic will want to take it in to account.

I was seen at St Mary’s last year (October 2013) and for the first appointment you will be scanned, medical history taken and lots of blood drawn. These are for clotting, thyroid and antiphospholipid antibodies.  You will need to go for a hot chocolate or something afterwards. You may wish to take your old notes and paper work copies with you if you have them, they may take some copies for your file. You may be invited to sign up for the TABLET test which is a study involving thyroid antibodies. Many of us donated a sample but were not used for the trial because we didn’t fit the criteria, but you might be, if you wanted to sign up.

If you need anything doing (hysteroscopy etc.) they’ll book that in. I had a septum removed, which was fine, like an ERPC with two coils and HRT for a month afterwards. It was a day procedure and not very painful. Things to consider for St Mary’s; they don’t allow partners on the ward, so you will be admitted and put in bed for the day and your partner sent away at 07:30 am and asked to come back at about 15:00 (they’ll call him). This is unlike other hospitals where you can wait together until it’s your turn. Take a good book. At St Mary’s, they also try to fit in as many operations as possible, which can mean that there is a long wait if someone’s procedure takes longer than expected. When I was there, someone was sent home and given a new date for surgery. This was obviously very upsetting for them. I think this is rare, however, and was caused by an earlier surgery of the day being more complicated than anticipated. It happens.

You might have a non-surgical procedure, or just the blood tests, so please don’t be worried that you’ll necessarily end up in theatre!

You’ll go back for repeat blood tests 6 weeks or so after the first lot and then have an appointment to give you all your results about a month after that. They’ll tell you what your treatment/plan will be and then you ‘go forth and multiply’ and call them when you’re pregnant again so they can do the TEG blood test again and decide whether you need anything for that, too, in a pregnant state, as it can change that result.

Many ladies have also been up for private NK (natural killer) cell testing with Profs Brosens and Quenby at Coventry. This costs £360 and you need to have had 2 periods before you go. They take a uterine biopsy and then advise what to do when trying again. Some people have told me that the biopsy doesn’t hurt. I found it quite uncomfortable both during and afterwards, but nothing that paracetamol won’t deal with. They usually recommend 200mg progesterone from CD21 to CD28, carrying on if you get pregnant, and then Heparin from ‘in uterine’ scan. If you have high NK cells, you may also be offered steroids, but other ladies will know more about that. I do know of at least two success stories from ladies who have been to this clinic.

The results of the biopsy take about 5 weeks and they will email you with the outline results and a time to call for your consultation. After that, you’ll be emailed a letter detailing your treatment plan. If the protocol doesn’t work within three months (as happened with me), they may suggest not using the progesterone until you get a positive pregnancy test.

You will need to not be pregnant for these procedures and tests, and hopefully the break from trying to conceive will help you to get your head around everything and heal emotionally.

I hope this helps some ladies (and their partners) to understand what tests they can expect at these clinics. Remember, 50% of couples never get a clear answer as to why this has happened to them. As distressing as this is (because we want answers), it’s actually good news, because it means that you have a very good chance of being successful without intervention in the future.

The things we do

Tomorrow I’m going to put my body through a tough physical ordeal. I’m going to swim 2 miles in open water (http://www.greatswim.org/events/great-east-swim) for Tommy’s the baby charity (http://www.tommys.org/). I am quite apprehensive about it, to say the least.

Ever since I joined the unfortunate Recurrent Miscarriage club, I have felt compelled to engage in a range of what some might call ‘extreme’ behaviour (from the little reading I’ve done, people who have suffered trauma tend to do this). The lack of autonomy that any long term illness causes does make seems to make people want to do something to take some of the control back. So I swim. Outside. In lakes and waterways. Don’t misunderstand me, I enjoy it very much. But tomorrow’s two miles will be a challenge.

I want to write today about the part of my journey that took swimming away from me.

In May 2012 I had my second missed miscarriage (which I really didn’t see coming – I had, rather foolishly, believed people when they told me that I was unlucky, and it was very unlikely to happen again. Idiot.). The baby was showing no signs of coming away naturally, and so an ERPC (eugh phrase) procedure was booked for the next day. I’d had one of those in November 2011, so I knew what to expect. The procedure was uncomplicated, and I returned home to watch daytime TV and eat chocolate ice cream (not actually prescribed by the NHS, but helpful in their own way).

Two weeks later, I was still bleeding, quite heavily. I was still getting positive pregnancy tests. It was, as you can imagine, quite distressing. I put my mental recovery on hold while we tried to sort the physical stuff out.

After 5 weeks of ‘wait and see’, my GP sent me back to the EPU for another scan. There was some comparing of notes from my file and lots of to-ing and fro-ing. What was that mass?

MASS????!!!!!

A second ERPC was booked and a further scrape was done. You may be surprised to learn that these procedures are undertaken blind. Yes, that’s right. The surgeon CAN’T SEE WHAT THEY’RE DOING. This time, I lost a lot of blood (I’m not crying incompetence, I was red-raw inside and infection was taking hold. They wanted to make sure they got everything this time; it happens). I spent the day on the recovery ward having my bloods checked. Amazingly, because I am reasonably fit and active, I recovered well (thank you, swimming).

But it wasn’t over yet. I continued to bleed. We returned to the hospital again and this time saw the top consultant for a hysteroscopy (procedure where they take a look using a little camera). The mass was back. It couldn’t be removed for fear of causing damage (the dreaded Asherman’s syndrome, where scar tissue fills the uterus, and can lead to infertility). This wasn’t the news I was hoping for.

At this point, my local hospital referred me to UCH in London so that someone else could have a look. I must say that the EPU in UCH is like the Disney Land of EPUs. Its set up so well and everyone there is really great and taking care of you. More on them another time. On this occasion, I was scanned by 2 consultants who diagnosed retained products and booked me in for another ERPC in a few days time. I was blooded and consented and ready to roll.

The next day, I received a phone call from UCH, could I come back in NOW, the top consultant wants to have another look. So (not panicked at all), I returned to London. This time the plan was more conservative. What I had was a massive blood clot. My poor uterus (not following the stoic example set by the mind) had given up and simply couldn’t be bothered to heal. This was quite common and is sometimes observed in breast feeding mums, I was told. Its hormonal. Your body doesn’t know what to do and has given up. I was prescribed 2 weeks of HRT, which kick started the whole cycle and two weeks later I was back to ‘normal’.

I was, obviously, unable to swim (certainly not in lakes and waterways) for the whole summer. Gutted.

I shall have to remember how much I missed it when I’m half way round Alton Water tomorrow!

http://uk.virginmoneygiving.com/RossisRiding (My DH is also fundraising for the same cause by riding the London 100 in August, hence the shared page.)

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