I’ve been really keen to try and help with research into miscarriage in some way and so I have been keeping an eye on the Tommy’s website since their early miscarriage centre opened in London in April.
I checked the site a couple of weeks ago and found they were recruiting for two different trials that I might be able to take part in. The criteria were that you needed to be between 18 and 42, have had two or more miscarriages, be able to travel to Coventry or Birmingham (the hospitals there are conducting the trials) and currently be trying for a baby but not yet pregnant. I ticked all the boxes but wanted to check if the fact I had had a successful pregnancy would make a difference and if my progesterone supplements would rule me out.
So I rang last week and got a call back from a lovely midwife who works in the Tommy’s funded research unit at the University Hospital in Coventry. It was such a nice feeling to talk to someone who knew exactly how you were feeling and made you feel supported, even in just that one conversation. It made me realise the importance of that engagement during fearful times, not just when you are pregnant – that somebody lets you know that they understand and are there to listen. It made me quite upset as I was so pleased!
I found out that I was eligible for the two trials: one is the SiM trial, investigating whether scratching the lining of the womb could prevent miscarriage among women aged 18 to 42 and with two or more previous miscarriages. The second is the Alife2 trial, assessing whether anti-coagulant (blood thinning) treatment reduces the risk of miscarriage in women with inherited tthrombophilia and who have had at least two consecutive or non-consecutive miscarriages. Thrombophilia is when your blood has a tendency to clot more than normal. Both trials are being undertaken by Professor Siobhan Quenby, the doctor my sonographer mentioned to me back in January.
I was sent information on both so I could read through it and discuss with my husband, and decided I would like to take part. So the next day I spoke with the midwife and arranged to go to the University Hospital in Coventry early this week.
We travelled up as a family and I had some initial blood tests taken to see if I carry the inherited thrombophilia gene, and also to check for other immune disorders such as lupus, as well as Vitamin D deficiency.
I wasn’t sure if I carried this gene as my mum had no issues but I was interested to hear that it can be carried by your mother or father, and even if your mother has had successful pregnancies, that may have just been luck. The Alife2 trial is to determine whether women with inherited thrombophilia are helped by injecting heparin during pregnancy. It has been proved this helps with the acquired type of thrombophilia – it will either prove it works hopefully, or rule it out so women don’t have to worry about daily injections. One group will have the treatment and one won’t to measure its success.
I had a great chat with the midwife and she talked a lot about how the unit is investigating miscarriage including the theory that taking a long time to get pregnant may mean the body is rejecting healthy embryos because it is looking for the ‘perfect one’ and being too picky, whilst getting pregnant very quickly and suffering constant loss is also the same issue in reverse – that the body is accepting too quickly embryos it should be rejecting and the result is recurrent miscarriage.
If my blood tests are ok, then I will be able to take part in the SiM trial instead, which looks at whether scratching the lining of the womb before pregnancy, which stimulates stem cell growth, helps sustain a pregnancy in women with a history of miscarriage. That will again involve being put into a randomised group and if I am in the group that is to have the scratch, I will travel up 7-10 days post ovulation and have it done.
In the meantime, I was advised to visit my GP and ask to be referred directly to Professor Quenby’s NHS clinic in Coventry so I can be put under her care and chat with her directly. That should take 4-6 weeks and I have made an appointment at my surgery for a few days time. You do have the right to ask to be referred to any specialist clinic but I had become disillusioned because I had already been referred in April to the early miscarriage clinic in London and have heard nothing yet. I’m more optimistic now!
So I’m currently waiting for my blood results to come back and we decided to stop trying until then, although the midwife said that they would never ask anyone to do that. I just feel that I really would like to go ahead with helping either trial and waiting for the results is the most sensible thing to do. I know that I may be put into a group that won’t receive the treatment, but knowing that I will be helping either way has made me feel so much better and given more sense to things that don’t yet have answers, but may do in the future for others.
It’s important that more people have access to this information, helping to push for investigation within the NHS after two miscarriages not three. To find out more about the trials, click here.
Image from Pixabay