October's Blog (Part 1) - Christina's experience of pregnancy with lupus

[Paul_Howard]

We're continuing the topic of lupus and pregnancy in our blog for October. The first part of this month's blog has been written by Christina about her pregnancy. Thank you Christina for taking the time to write this for us.

I was diagnosed with SLE when I was fourteen years old. It mainly presented with chronic joint pains and fatigue which were very hard to deal with as a teenager.

After my first baby and years of my lupus being stable, I fell pregnant with my second child. Everything seemed to be going fine until I was scanned at 23 weeks. The consultants said that I was not as far gone as I thought I was as my baby was smaller by a few weeks. I was called back for further scans during that week, as well as having appointments with the specialist midwives. At my midwife appointment, they checked my BP which was slightly raised. I also had protein in my urine but this was ‘normal’ for me as I had lupus nephritis in 2001 which left scarring in my kidneys. The midwife had me admitted to hospital straight away which confused me as I felt fine. I just put the tiredness down to being pregnant and having lupus.

Whilst in hospital I was scanned every day and my BP was monitored. I had been told by my obstetrician to expect to be in hospital for the rest of my pregnancy which scared me. On day 4 of being in hospital, I was moved up to the labour ward. My obstetrician had to be straight with me; She said I had blood clots on my placenta and my baby, although she was still alive, had stopped growing and was going to die. I felt like the wind had been knocked out of me. I could not breathe. I had pre-eclampsia and I was going into renal failure. If I didn’t deliver my baby now, I could die. If I wanted the chance to try for another baby, they had to induce my labour there and then, otherwise I would spend the rest of my life on dialysis and there would be no chance of having a baby. It was a dark time that I will never forget. Esme Rhianna was born sleeping on Mother’s Day, Sunday 18th March 2007. I remained in Hospital for another week where I saw my little baby every day in my private hospital room.

The way I dealt with the loss of my stillborn baby girl was to get pregnant again. I fell pregnant two months after giving birth to her. This time, the consultants really took caution with my pregnancy. I was under the care of rheumatology, nephrology, obstetrics, haematology and the specialist midwives team. Not a week went by without a hospital appointment or a scan. Sometimes I was seen two or three times in one week. I ended up being signed off sick for my whole pregnancy as I had so many appointments and I was such a high risk pregnancy.

I had to take two different medications to control my blood pressure; I injected a blood thinning drug every day as well as taking all my regular lupus medications.

I was hospitalised three times prior to giving birth as I had various pains. I also developed a condition called allodynia which felt like someone was pouring boiling water over my baby bump. The pain worsened when touched but was constantly there. I had to take pretty strong pain killers to control the pain and was petrified that something was going to go wrong again. All the specialists involved in my pregnancy and care at King’s College Hospital really reassured me and I received the best care and support.

Due to my previous still birth, I was induced at 37 weeks gestation. My labour was quick and straight forward with no complications. I gave birth naturally to Louis on the 11th of February 2008, less than a year after his sister died. Tiny, he only weighed 5lb 10oz but he was healthy.

Louis is now six years old, my daughter is seventeen - both are my absolute world. I would love to have another baby as despite the anxiety, I love being pregnant and giving birth. Both my daughter and my mum have ruled it out for me as it doesn’t just affect me. Having SLE and being pregnant, demands so much care and support. It creates a lot of pressure, stress and worry for my family. I count my blessings that despite suffering with SLE, I have been able to have two beautiful children and I am thankful for what I have.

Part 2 of this month's blog (Rebecca's story) will be posted later this week.

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

[alison11mt]

Christina you have been through so much, nobody can ever understand what it feels like to lose a child. I cannot begin to understand what you have been through having a stillborn. I am so glad you went on to have a healthy baby and that Louis brings you so much happiness. I lost 7 babies but all in the first 3 months of pregnancy which over the years had a huge impact on my physical and emotional health as well as on my family. I had no diagnosis of Lupus at that time though now when I look back over the decades, it is clear that I did. I was only diagnosed this time last year, I am now 53 and I reckon I had my first episode when I was 15. In between I have had 3 healthy babies but each with troubled pregnancies. I would have loved to have had another baby but by body would not have coped.

Like you I am grateful for what I have, and in that sense I feel blessed.

[Chrissie_up in reply to alison11mt]

I'm glad you finally got a diagnosis and have had children. We are very fortunate to be able to have children despite having this awful illness.

Many women are denied the chance because of ill health.

I hope that your lupus is not too troublesome now...

Xx