October's Blog (Part 2) - Rebecca's experiences of pregnancy with lupus

October's Blog (Part 2) - Rebecca's experiences of pregnancy with lupus

The last post on the topic of pregnancy and lupus has been written by Rebecca about her pregnancy. Thank you Rebecca for taking the time to write this for us.

I was diagnosed with SLE in January 1999, during the 2nd year of my Speech and Langue Therapy degree in Birmingham. I was fortunate to be diagnosed very quickly following the onset of my symptoms which were extreme fatigue, painful and swollen joints and a facial rash. It reached the point where I required assistance with all daily activities; very difficult for a 21 year old woman to accept. After a two week inpatient stay in hospital I was given the diagnosis of SLE having never heard of it before and I was started on medication – steroids, anti-inflammatories and hydroxychloroquine. I took it upon myself to find out as much as I could about the condition through joining LUPUS UK and reading what I could find on the subject. One of the symptoms I read about was the risk of miscarriage. Being 21 and a single female it didn’t worry me too much at this point but remained at the back of my mind.

In 2003 I was working as a qualified Speech and Language Therapist and my lupus had been pretty stable and well controlled by medication. Following a period of stress I suffered a flare up and was admitted to hospital for further investigations. At this time I was given the diagnosis that I had polycystic ovaries and told I would struggle to conceive; all I could think about was the odds that now appeared stacked against me of one day becoming a mother. As I was not in a relationship and having a family still seemed a long time away I focussed on my career and put this to the back of my mind.

Forward onto 2011 and I was now in a very happy, loving relationship with my fiancé Adam - we were set to get married the following year. My lupus remained well controlled and my flares were becoming less and less. In May 2011 LUPUS UK were holding their annual conference in Southampton and one of the presentations was about lupus and pregnancy. As starting a family was now something that was in my thoughts, we wanted to find out as much on the subject as we could. The various consultants I had been under since 2003 had said not to worry about the diagnosis of PCOS and that when the time came to try for a baby if I experienced problems they would investigate further. So myself, Adam and my parents who had been an absolute rock for me during the years attended the conference. I felt so well informed afterwards of what the risks were of a possible flare up during pregnancy and following birth as well as risk of miscarriage at the different trimesters. I was now just taking hydroxychloroquine and the speaker confirmed what my consultants had told me that I would be able to take this medication while pregnant, with no harm caused to the baby. I left the conference feeling reassured that if I was able to fall pregnant I could have a relatively healthy pregnancy.

In 2012 Adam and I got married and we began to think about starting a family; I was now 34 so my age was also a factor I had to think about. At my Rheumatology appointments I discussed starting a family with my consultant. Before trying to conceive they wanted to check my blood clotting risks so carried out some blood tests. They soon confirmed that they were happy for me to start trying, and reassured me that they would monitor me closely when I did fall pregnant. The only medication I was on for my lupus now was hydroxychloroquine and despite my requests to come off the medication as I had been stable for so long they reiterated that the dose I was on was safe for pregnancy and there was more risk if I came off it. On Christmas Eve 2013 Adam and I discovered I was pregnant, I had fallen pregnant as soon as we started trying and we could not believe it, an amazing early Christmas present. We were over the moon, but my worry was now taken over by my risk of miscarriage. Two weeks after finding out I was pregnant my lupus started to flare up and I was overtaken by the extreme fatigue and painful swollen joints. This resulted in me being off work for two months which seemed to last forever, probably because of the worry added with the fact only immediate family knew I was pregnant.

At six weeks I started to experience terrible stomach cramps so my GP sent me for an early scan, thankfully the pregnancy was healthy but I just broke down in tears with the midwife because I was so frantic with worry over my lupus symptoms. The midwife was brilliant and arranged for me to see one of the obstetrician team straight away who liaised with rheumatology (who also saw me that day) and I was started on aspirin which I would take throughout the pregnancy. It was decided that I would be reviewed by rheumatology every six weeks throughout my pregnancy and I would be under the care of a consultant.

Reaching the twelve week point and having our scan on Valentine’s Day was the best gift ever to see a very active healthy baby. I started back at work and from this point I felt so much better and the lupus did not cause any more problems. I received excellent care from the community midwives and it was great to see that people had an understanding and knowledge of lupus. My bloods, which were monitored throughout pregnancy, were always normal and the consultant told me it was expected I would have a normal delivery but would require continuous monitoring until then.

As I was taking hydroxychloroquine I had to have a growth scan at 28, 32 and 36 weeks as there was a risk that the baby’s growth could be affected. The size of my bump did not seem to fit with this and at my 32 and 36 week scan I was measuring at 4 weeks ahead. The consultant was not worried and the plan was for me to still go ahead with a normal delivery. Our due date of the 28th August came and went with no sign of our baby making an appearance. Eight days past our due date of the 3rd September I had a membrane sweep and following a day of general discomfort, on Thursday 4th September at 9am the contractions started thick and fast. By 12pm we were in hospital and mine and the baby’s heartbeat was monitored from this point. I had gas and air, three doses of pethadine and an epidural but the pain relief was not easing the contractions. By 9am Friday 5th September I was told I was ready to start pushing and in an exhausted state I pushed for two hours. The Surgeon came to speak to me and offered to try ventouse and then an emergency C-section if that did not work. I was so exhausted and was desperate now to meet our baby and for us both to be safe. They tried ventouse twice with no success so an immediate emergency C-section was carried out with my husband by my side. At 12.36pm our beautiful baby girl Bella Elizabeth Wooller was born weighing 9lb 8oz. We were so relieved to see our healthy baby girl, all the worry and hours of pain were worth it. The care I received was amazing throughout pregnancy, labour and post birth. I could not have asked for better.

Bella is now 4 ½ weeks old and we are loving being a family. I have to inject myself daily for six weeks post birth with heparin to reduce my risk of blood clotting, and for someone who doesn’t like needles that hasn’t been much fun, but I just think of Bella, and I remember why I have to do it. I am also wearing TED stockings for 6 weeks.

There was a time when it seemed that I would have to accept that I would not be fortunate to have a baby of my own, but here we are with a very healthy baby girl and a very healthy mummy and we couldn’t be happier.

Further information about lupus and pregnancy can be found in our factsheet, which is available to read at lupusuk.org.uk/images/pdf/7...

The topic of our blog for November and December is 'Expert Patients'. If you have taken part in an Expert Patient Course we would really love to hear from you about you experiences and whether it has had an impact on your healthcare. Please email paul@lupusuk.org.uk with your story.


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