Pregnancy/children . Very sad times :-(

[Stacy2310]

Hi everyone

I'm new to this site so don't really know what I'm doing! I'm having a massive flare and thought I would join to try and get some help and advice on the disease that seems to enjoy kicking me in the teeth at any given opportunity! I'm diagnosed with sle.

Has anyone had any complications with passing on antibodies through pregnancy?.

Thanks xxx

[brave]

Welcome ;)))im with you on flare my sweet ,and genuinly feel your pain ,it sucks and i find being out of control torture .Im not sure about passing antibodies?i just read an article from ARA and it stated that theres a small chance of passing antibodies,i looked at my ten yr old daughter and felt utter guilt .My mum sufferd M.S and i know its a sister to lupus in someways .I had a great pregnancy ,i flared 1st and 3rd trimester but felt great in 2nd trimester .What is your history with lupus?if you dont mind me asking?take care ,brave

[Shann07]

Hi Stacy not sure if all lupus sufferers have positive ANA and APS but i do and this had massive complications in pregnancy for me both times, i unfortunately lost my 2 baby boys and was in ICU for a long time because these a/bs caused HELLP syndrome. I wasnt diagnosed with lupus then so obviously thats why i got so ill. Good news is i now have 2 beautiful children and both pregnancies uncomplicated, i was treated with daily injections of Clexane and aspirin. I think both babies were tested straight after delivery for a/bs and were negative. There is always a good chance of a positive outcome with intensive medical support, the rewards were worth all the trauma and im so glad i took the risk, take care x.

[Hidden]

HI stacey, I have mixed connective tissue disorder, raynauds, APS and rheumatic arthritis. I didn't know until 6 months ago and I had 7 miscarriages at around 4 weeks and then a failed pregnancy at 13 weeks, the baby died at 6 weeks but I had to have an operation to remove it. After that I managed to have my little boy, He was fit and healthy but I nearly died having him, the placenta got stuck and I bled out for an hour before they operated to remove it. This was all apparently linked to the APS but at the time no one knew. Iv been told I could possibly have another child but my risk of miscarriage is high since iv had so many, that and being told if I have a daughter the risk She would end up like me is high has meant I probably won't have another child. I would suggest talking to your gp and rheumatolgist about all this especially before Trying for a baby. FRom What I can gather everyone is different so your probably better off finding out your own risks and wether there worth it for you Xxxx

[Stacy2310]

Hi everyone

I was diagnosed with lupus 4 years before I had my son. I was well in my pregnancy, but at my 20 week scan it all went down hill. I was asked if I ate a lot of chocolate or drank a lot of coffee, to which I didn't both. The next thing I knew I was being sent to the John Radcliffe hospital for a fetal scan.

Basically they told me my antibodies had been passed on through the placenta to my baby. This caused a condition for my baby called congenital complete heart block. This means his heart was drastically slow at about 37 beats per minute. From this moment on I was scanned weekly to basically check he was alive. At 36 weeks I had a c-section.

He was born and was taken to scuba where he stayed for a week. Then at 6 weeks he got ill, breathless wasn't feeding, he had to have a operation to have a pacemaker fitted. This was to help his heart and keep him alive. He is now 9, has had another pacemaker since, is due another in about 2 years and will continue to have one for the rest of his life.

When we decided to try for anther baby I was monitored at JR from conception. All was fine until 22 weeks when it all happened again. This time the heart was weaker and had a lot of fluid buildup. Again weekly sometimes 2 weekly scans were given. She was delivered at 36 weeks and had a pacemaker fitted at 24 hours old.

Things were ok for her until she was 18 months, then she was diagnosed with asthma, things just weren't right. Then she was taken extremely ill, she was in serious heart failure. She was diagnosed with dilated cardio myopathy.

We were ambulances to great ormond street, she was in icu, where she had 9 failed heart surguries in 7 days. She then spend 9 weeks on life support before having a 12hour surgery to be fitted with. Berlin heart,. Her heart was beyond repair and the only hope we had for her was to have a heart transplant. She was 3 years old. She waited 5 months on this machine before an angel gave her her gift of life. She was in hospital 14 months in total and we nearly lost her on a number of occasions.

She now faces a life of medication tests and monitoring but she is here, her heart will not last forever but we have her for the moment.

All this because of my lupus, I feel such guilt it's horrendous, all the while I'm feeling crap. I'm yet to come across anyone who has had this happen. While I would never wish this upon anyone, I would like to know "why me?" It's so hard to see what I put my little girl through, she's so brave covered in scars and doesn't even care. I worry all the time she will hate me when she's older for what me and the stupid illness has done to her.

Sorry for such a long post, I'm really hoping to find this group helpful as to be honest I turned a complete blind eye to my lupus until now when it's all getting all a bit much so I need to know all I can!!!!!

Thanks everyone xxxxx

[Shann07]

Hi Stacy, I am in awe of your situation and how strong you are. You have been through an horrendous time, i find your blog so inspirational, bless you and your children. I know the guilt you must feel i too feel that when i look at my kids thinking im selfish bringing them into the world when im not healthy and fit to run around after them. I have boys so i think there is a smaller chance of males devloping lupus. I suffered 2 horrendous pregnancies, i almost died and was on life support, my babies died i was 25 wks pregnant when all went wrong due to APS, but i was lucky enough to hav 2 more healthy children, like you scanned every week. Please dont blame yourself stacey for your little ones medical problems, you risked your life to have them and your son & daughter obviously know how much you love them. Some nights i lie awake i think what if my lupus gets worse & what if ive passed this to my babies & i hav a quiet cry. I cant imagine what it must be like for you when your children are ill, you are such a strong person. Thank you for sharing your situation it has been truly inspirational, i pray your children will get stronger and healthier everyday xx.

[Helly72]

Hi Stacy

Your story is humbling, thank you for sharing it. You are clearly a loving , caring mum and your children are lucky to have you. Through illness comes strength and closeness. Blaming yourself is a waste of your precious energy, although I can fully understand what it must be like in those dark moments of guilt. Talking to others in a similar situation, like this site, is a great support. Keep strong and enjoy the time you have.

Helly