September's Blog (Part 1) - Emily's experience of pregnancy with lupus

September's Blog (Part 1) - Emily's experience of pregnancy with lupus

The topic of our blog for September and October is lupus and pregnancy. For the first part of this month's blog Emily has written about her pregnancy. Thank you Emily for taking the time to write this for us.

I was diagnosed with SLE in September 2011, 10 months before I was due to marry my husband. The plan was to marry and start trying for a family straight away, all those years of being careful not to get pregnant until the 'right time' and then being given my diagnosis of lupus; to be told it may be difficult to get pregnant or even carry a pregnancy successfully completely blew me away, all I could think of (maybe quite selfishly now) was how my ultimate dream of being a mother may never happen and I was devastated. I discussed this with my consultant who was very supportive, I had just had a flare and was told I needed to get well, stabilise on medication and be flare free for 6-9 months. At no point did she discourage me from wanting or trying for children and said that there was no reason without the right help and support I couldn't have a child. I was therefore put on prednisolone (which was eventually reduced to 8mg), hydroxychloroquine 400mg per day, Adcal 2 tablets twice per day and azathioprine 125mg per day. I was told if I did become pregnant, they were safe medications and levels to be taking.

In May 2012, I asked to be referred for the preliminary tests to begin planning for a pregnancy, one of which was to check for 'sticky blood'. My local hospital in Dudley referred me to Birmingham Women's Hospital for specialist care where Professor Caroline Gordon is based. My appointment was due to take place in July just before we were married. Thinking I probably wouldn't conceive for some time, my husband and I gave up using any protection and one month into doing this I began to feel unwell. I suspected I may be going into another flare; I was feeling sick and had a headache. I did a pregnancy test to rule that out as a possibility and magically the test was positive!!!! We were so happy, but then the panic set in; I hadn't had the initial tests done at the hospital and I hadn't taken folic acid in preparation either!! My consultant saw me the following day after finding out I was pregnant; she was wonderful and referred me for an immediate appointment at Birmingham Women's Hospital. I was assured my medication was safe, so this wasn't altered and I started on folic acid. I was also given 75mg of dispersible aspirin to take per day to help thin my blood.

My experience at Birmingham Women's Hospital was wonderful, we had a scan at 7 weeks (we saw the baby's heartbeat it was fact it was the day before our wedding!) I was also told that I did not have 'sticky blood' which was a further relief. Scans took place every month, as did a consultation with the obstetrician and lupus consultant- we saw them together, which I felt really helped with consistency, not repeating the same information to different people. Every week that went by I felt more and more lucky. However, towards the end of the pregnancy (third trimester) complications started, I was told that this can be expected in lupus patients, I developed Obstetric Cholestasis (a build-up of bile acids in the blood stream) which meant my whole body was itchy, then gestational diabetes and at the very end, pre-eclampsia. All of these things you can develop whether you have lupus or not but I was told there was a higher chance of getting them due to my condition.

I worked until I was 33 weeks pregnant; we were told there was a possibility of the baby coming early - I didn't believe the doctor and genuinely thought that we would be induced at 38 weeks as originally wrong could I be?! I went into labour a week after commencing maternity leave. They wanted me to have a natural birth as it is believed that a C-Section could cause problems after pregnancy with the healing process and the immune system. I went into hospital as soon as the labour began as I started to bleed heavily. We were reassured that at 35 weeks everything would be fine and they wouldn't attempt to stop the labour at that stage.

Our healthy baby boy, George, was born on 2nd February 2013, he was 6lbs at 35 weeks, so I think the steroids I was taking during pregnancy worked!! I also had a steroid boost for his lungs when in labour.

Soon after he was born, there were complications with my blood pressure and what was disappointing was I was only able to have a few minutes with George until he had to be taken to the ward and the doctors had to help me with my blood pressure due to the pre-eclampsia. It was scary - much more so I think for my husband but it was all fine after more medication to bring this back down. George had to spend five days in hospital on a heat pad to regulate his temperature and also to monitor my lupus after I had given birth.

On leaving hospital, I then began to feel scared; I needed to be healthy for my baby and to give him everything I could- I am after all his mother. I struggled with the sleepless nights, I found it hard to nap when he did; thinking I had to entertain guests who wanted to meet him. I was determined to do what every other mother does and be everything to everyone, which was very silly. During my pregnancy we were strongly advised by Professor Gordon to have support mechanisms in place as far as we could, strongly stressing that I could be ill afterwards. Fortunately, we have a supportive family who were there for us. Yes, I needed support and sometimes I think I should have let people help more! It was my choice not to breastfeed, we were told it was completely safe to do with my medication levels but for me personally I decided it wasn't what I wanted. This was for no other reason than I believed George had enough steroid and other medication exposure during pregnancy and I didn't want him to have any more. It also meant that my husband was able to help with feeds, which was particularly good at night.

To my amazement, I have remained stable from the day I gave birth to now. I believe that the success of my pregnancy was down to the amazing treatment from all professionals involved in our care. We had a follow up appointment at the hospital after having George, more tests were run and my lupus showed no sign of flaring. I was then discharged back to my local hospital.

George is a happy, care- free little boy who has brought so much joy to our lives. I will never be able to thank the staff enough for the care and support they offered to us as a family. Yes it is hard sometimes, the tiredness is particularly difficult but you have to plan to rest as much as you can. I am now also back at work, something I truly feared, but so far so good after 8 months of being back. I work part time and that is working well for me at the moment. We may even be considering number two in the near future!!

Part 2 of this month's blog (Heidi's story) will be posted next week. If you would like to share your experiences of your pregnancy for our blog next month, please email

Further information about lupus and pregnancy can be found in our factsheet, which is available to read at

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