Hi my name is Gill, I'm very confused about lupus. I'll jump straight to the point & explain. I recently lost my second baby (12 weeks ago) I'm still very raw so please bear with me.
I'm confused because although the dr's give me info overload I'm still confused as to if I have Lupus SLE or discoid Lupus.
They first realised I have Lupus when I was pregnant with my 2nd baby during a routine antenatal appt at the hospital. 12 months before this I had my first baby (Kimberley) I had a pretty straight forward pregnancy up until 26 wks when I suddenly developed severe pre eclampsia. Kimberley was delivered by c section when my body started failing. She weighed 1lb 4oz, she was in special care for 16 days before she died. They put her death down to severe PE.
With my 2nd baby as I mentioned they picked up my Lupus at around 20 wks. They described it as my body is fighting to get rid of my baby just like our antibodies fight off a cold. One dr even implied I was allergic to being pregnant! I was treated with asprin & fragmin injections. I delivered a healthy baby boy at 37 wks by c section (matthew now 10) weighing 4lb 13oz, They delivered me at this stage as I was developing pre eclampsia.
With my 3rd pregnancy I was started on asprin & fragmin at around 6 wks, again the preganacy was very stressful but thankfully I delievered a baby boy (Kyle now 3) at 38 wks again by c section weighing 7lb.
with my 4th pregnancy I was started on asprin & Tinzaparin at 14 wks. At 24 wks I had a uterine dopler scan, they noticed that I had uterine artery notchings which basically means the blood to the placenta wasn't great, I presume because of my blood was clotting too much. I was then booked in for 4 weekly growth scans. From around 25 wks my bp started to rise & occasionally had protein in my wee. At my 28 wk growth scan they noticed my baby's growth had slowed down & he was measuring 25 wks. My bp was sky high & i had 2 traces of protein. I'd developed PE again & I was admitted. The next day they did another detailed scan & they noticed that the blood flow to the placenta was seriously affected & the flow was now reversing back from the placenta meaning my baby wasn't getting all he needed. After 3 days they decided to deliver me again by c section. Lewis was born weighing 1lb 12oz and passed away after 2 & half hours. Needless to say we are devastated. On Lewis death cert the causes of death were Mother's Lupus, High Blood pressure (pre eclampsia) & uterine retardation dopplings. They may have well have said I'd killed him. My condition has never really been explained to me. I recently met with my consultant about Lewis's death & she said I have discoid lupus. I'm confused I feel like I'm being told different things. Do I get SLE only when pregnant then have discoid lupus when I'm not?
I'd like to chat with other people who have been affected by the loss of a child due to Lupus.
Thanks for listening
Gill x
I'm confused because although the dr's give me info overload I'm still confused as to if I have Lupus SLE or discoid Lupus.
They first realised I have Lupus when I was pregnant with my 2nd baby during a routine antenatal appt at the hospital. 12 months before this I had my first baby (Kimberley) I had a pretty straight forward pregnancy up until 26 wks when I suddenly developed severe pre eclampsia. Kimberley was delivered by c section when my body started failing. She weighed 1lb 4oz, she was in special care for 16 days before she died. They put her death down to severe PE.
With my 2nd baby as I mentioned they picked up my Lupus at around 20 wks. They described it as my body is fighting to get rid of my baby just like our antibodies fight off a cold. One dr even implied I was allergic to being pregnant! I was treated with asprin & fragmin injections. I delivered a healthy baby boy at 37 wks by c section (matthew now 10) weighing 4lb 13oz, They delivered me at this stage as I was developing pre eclampsia.
With my 3rd pregnancy I was started on asprin & fragmin at around 6 wks, again the preganacy was very stressful but thankfully I delievered a baby boy (Kyle now 3) at 38 wks again by c section weighing 7lb.
with my 4th pregnancy I was started on asprin & Tinzaparin at 14 wks. At 24 wks I had a uterine dopler scan, they noticed that I had uterine artery notchings which basically means the blood to the placenta wasn't great, I presume because of my blood was clotting too much. I was then booked in for 4 weekly growth scans. From around 25 wks my bp started to rise & occasionally had protein in my wee. At my 28 wk growth scan they noticed my baby's growth had slowed down & he was measuring 25 wks. My bp was sky high & i had 2 traces of protein. I'd developed PE again & I was admitted. The next day they did another detailed scan & they noticed that the blood flow to the placenta was seriously affected & the flow was now reversing back from the placenta meaning my baby wasn't getting all he needed. After 3 days they decided to deliver me again by c section. Lewis was born weighing 1lb 12oz and passed away after 2 & half hours. Needless to say we are devastated. On Lewis death cert the causes of death were Mother's Lupus, High Blood pressure (pre eclampsia) & uterine retardation dopplings. They may have well have said I'd killed him. My condition has never really been explained to me. I recently met with my consultant about Lewis's death & she said I have discoid lupus. I'm confused I feel like I'm being told different things. Do I get SLE only when pregnant then have discoid lupus when I'm not?
I'd like to chat with other people who have been affected by the loss of a child due to Lupus.
Thanks for listening
Gill x