Pregnancy and infant loss awareness

This blog is guest written by a friend of the 360 Mama team about her journey conceiving second time round.

She wishes to remain anonymous.

5 weeks

5 weeks

5 weeks

5 weeks 

7 weeks 

I have lost count of how many times I have written these words when giving my medical history. This is the number of weeks at which I miscarried for each of the five pregnancies that I have lost.

Before I go on, I want you to know that touch wood this story has a positive ending: 21 weeks and counting... I am also lucky enough to have a four year old daughter who is wonderful and I couldn’t be more grateful for.

We conceived easily the first time round and had no issues during the pregnancy (until the delivery but I’ll come back to that). We took our time before deciding to try for another as we clearly weren’t ‘one of those couples‘ that had issues. The first one was a surprise, I frantically Googled, quoting the stats back to my husband that said that 50% of cases of bleeding during pregnancy were nothing to worry about, sadly I was in the other 50%.

The second was the worst, partly because it was on my birthday, but mainly because it confirmed a pattern. Most doctors won’t refer you as a ‘recurrent miscarriage’ patient until you’ve had three or more. The real specialists who work in this area are campaigning for this to be reduced to two as that number is medically significant and they want to stop people unnecessarily suffering a third.

Private vs NHS miscarriage treatment

I managed to get some investigations done after three miscarriages, largely by going private, but for various reasons I wasn't formally referred through until I'd had four. My GP said 'we won't count that one' because I had still been breastfeeding my daughter, despite it being confirmed by multiple pregnancy tests. It was these comments and delays that made the whole situation so many times worse than it should have been anyway. 

The kind private doctor told me that once I was referred properly, I would have no end of tests, which oddly sounded very appealing after so little support. Once I finally was referred, this couldn’t be further from the truth. I was given a limited number of blood tests to check for APS (‘sticky blood’ syndrome) and thyroid function and that was it, all of which were misplaced when I finally had my first specialist appointment at my local hospital.

The doctor put me on low dose aspirin and progesterone. She told me ‘the progesterone doesn’t really help, but it might make you feel a bit better’. In cases of three or more miscarriages it actually improves outcomes by 15%, not exactly huge but definitely worth a try.

At 6.5 weeks I was starting to think that it would work, breaking the 5 week pattern, but unfortunately it was not to be. This time I did my research before going back to see the same doctor. I asked a list of what I know to be sensible questions, but her patronising and arrogant responses were infuriating. Her one useful suggestion was that I go to see Professor Quenby a specialist in the field at Coventry Hospital, a Tommy’s Centre, through the NHS.

Tommy’s Centre

As it happened, I had already come to this conclusion on my own through Mumsnet research. My instinct had been to trust my local doctors, don’t turn to the internet, but I wish I had done exactly that far sooner. Then I would have found out that I could have seen the specialist after two miscarriages instead of five. 

Whilst I was waiting for my referral to go through, I took part in the Natural Killer Cell programme, which proved another dead end for me, but has been the answer for many women and I was glad to be able to try a new option.

As long as I had a plan I was okay. Once I had my full consultation with Prof. Quenby I finally knew I was in the right place. She was great and somehow managed to make me laugh during our first conversation. Her team of brilliant research scientists, specialist midwives and doctors are absolutely world class, both in terms of their amazing commitment to science and in how they completely get everything you’re going through.

From the hugs they gave me, to the chocolate cake they fed me, they are the most incredible people and I am so grateful for all of their help.  Right away ‘The Prof.’ as she is affectionately called by her team, suggested I sign up to one of their clinical trials that focused on the uterine lining.

In my case, the issue was most likely caused by the sepsis that I unfortunately had during the birth of my daughter. This particular issue is estimated to account for around 50% of all cases of recurrent miscarriage. At first I had some reservations about the trial, there is quite a high placebo rate and the thought of creating another life, knowing that there was a good chance that nothing would be different was really difficult, but I knew it was my best chance.

After embarking on the trial, at seven and a half weeks pregnant, I started bleeding again. Despite the 50% of bleeds being okay statistic, this has never happened to me during a pregnancy without it leading to a miscarriage. It was my husband’s birthday and I didn’t tell him all day, I wasn’t going to let it take that from us too. In the end, somehow, it was okay, and now at 21 weeks pregnant, and 4 clear scans, I am incredibly lucky to be saying so far so good. 

Whilst I am naturally cautious, I am now deeply relieved and happy. I am entirely indebted to the team at Coventry.

Miscarriage advice

My one piece of advice, skip your local hospital and go straight to one of the three Tommy’s centres and get referred after two miscarriages. They have access to experimental treatments that a normal hospital cannot go near, and their level of support is amazing. It is worth travelling for.

Dealing with recurrent miscarriage is all encompassing, and no matter what you try to do, it is almost impossible to not let it define you. When I was right in the middle of the bad times, a friend said to me - don’t let it take over your relationships with your family, it’s not worth it. She was entirely right, but this was the hardest thing.

To not want to break down in tears every time my daughter asked why she didn’t have a brother or sister, to not make every evening with my husband about trying to reproduce, but in the end, it is these relationships above all things that keep you going and drive you to get through it all.