Has anyone lost their baby at 21 weeks gestation because of lupus? Any advice anyone could give me would be greatly appreciated.

[kirstyleigh]

I hate to ask this question, but at the beginning of this year i was happily pregnant, i had my 20 week scan and found out we were having a little boy. But the scan showed that i had less amniotic fluid then i should. This is called Oligohydramnios. From that moment myself and my partner was so worried because we didn't no what it meant. Only that week things got worse. The next day my waters broke. I honestly thought, 'Oh my gosh, I've just wet myself' i immediately phoned the hospital and explained to them what had happened and what the results of my 20 week scan showed. She told me to get to the hospital as soon as possible. I had to have an internal examination which showed a pool of water, that water was amniotic fluid, which proved my waters had indeed gone. Myself and my partner, remained positive for our baby. but it was so hard not to worry. 2 days later I had an appointment at a different hospital which specialised in detailed scans to check the baby. We needed to find the cause for the leak of amniotic fluid. But it showed nothing. apart from that my little man had a clubbed foot due to the lack of fluid. However the next night i started experiencing pain down my left side, almost like an indigestion/trapped wind feeling, but much more uncomfortable, and again i started leaking more fluid. I phoned the out of hours doctor, and he said that unless the pain worsens or i start to present a big gush of fluid rather than little leaks, to stay put for the night. So i got into bed and went to sleep, to be woken the next morning about 6am with excruciating pain down my left side, to the point were i couldn't move without being in absolute agony. I just laid in bed until about 7am, i didn't know what to do, i tried to go back to sleep, but instead woke my partner and explained how much pain i was in. He phoned an ambulance and a paramedic arrived. Giving me gas and air and transporting me to the hospital. By this point i started to show blood. I was so worried, and prayed my baby was going to be ok. But my worse fears were confirmed when the doctor took my bloods, and later informed us that i had a major 'unknown' infection and at this point they had to intervene because my life was at risk. I had to start a strong course of inter venal antibiotics (through a drip in my hand), and i then had to be induced, and begin the process of labour. My little boy was born 9 hours later. Because i was only 21 weeks the doctors said that they could not interfere and try save my sons life because he was born under 24 weeks gestation. This broke my heart because he was born alive, and breathing on his own for 1 hour and 4 minutes. Now he's a beautiful angel in the sky. I remained in hospital longer than expected because i had to finish the course of antibiotics via a drip and not taken in a tablet form until i had left the hospital. I had an appointment with my consultant 1 month later and he told me that i had tested positive for lupus, and that i would have to be re-tested in order to confirm my diagnoses. So again i had my bloods taken. And today i found out that i tested positive again, So my diagnoses was confirmed. I have lupus and have been told i have to take heparin and aspirin everyday throughout my next pregnancy. Losing my son has affected me massively and its still rather fresh with it being only 3 months ago. But myself and my partner wish to try again soon. Im just terrified of how my next pregnancy will play out. I know it isn't going to be a straightforward 'normal' pregnancy. I am only 21 years old. and this was my first pregnancy. So please if anyone has any advice they could give me, if something like this has happened to you. was lupus the cause? Has anyone gone on to have a healthy pregnancy? Any advice will be greatly appreciated. Thank you.

[joannebond360]

Hey. I am so sorry at your loss must have been awful and very very sad for you. I have 3 children, first two fine but the pregnancy with my son is where my symptoms started 7 years ago. Pregnancy can be a

trigger so I've been told. My son was born fine and healthy. My symptoms got worse over time from then on.

Have they put you on any medicine yet to control the lupus? Some of them you can't take when your pregnant but there are some you can.

The hospital should work closely with your consultant/rheumy to monitor you closely.

I am sure you will go on to have a beautiful healthy baby. Unfortunately these awful things can happen in pregnancy with or without lupus.

Lots of love and big hugs to you and your husband.

Jo xx

[Natura]

Kirsch...I am so sorry for your loss....prayers to you and your family....I had my first daughter at 36 yrs of age. I am sure I had lupus my entire life, but considered low end. My daughter was a week late and I was losing fluid. Towards the end, I was seeing the doctor every couple of days and failed the stress test with no fluid left. I was sent to the hospital immediately and induced labor. I had a beautiful baby girl. I had another child at age 38, no issues, a beautiful baby girl again. I was very blessed since I am 51 now and probably have the clotting lupus since 2 of my brothers have it and I tested positive for lupus 3 months ago. I have not seen a rheumy yet to determine my treatment. I believe faith and prayer will help you through this most difficult time. Take care!

[kirstyleigh]

Thank you Jo and Natura for your replies. Its comforting to know theres others out there who suffer with lupus i can speak too and seek advice to help me understand the disease abit better. Before now i wouldn't have even known i've got lupus, sure i feel tired a lot and i experience a lot of muscle pain/ache but nothing out of the ordinary. They have not given me any medication as of yet, I only got my confirmed diagnosis today, so a follow up appointment should be sent to me in the post. My consultant has sent me a prescription for heparin and aspirin if in the waiting time for the appointment i fall pregnant, i can start taking the medication immediately. Im just scared of how my next pregnancy is going to be. And i don't fully understand lupus and how it affects the body. Take care both of you. Love & light x

[dgleds]

That's very sad.... very heart breaking.

Ive not been pregnant and have lupus, because I got lupus older in life.

BUT hormone situations like pregnancy, menopause etc...and stress, and mini like 5 % hereditary factor, can make lupus come on...( not always, but can).... As time goes on, remember that people with lupus can have pretty ok pregnancies...Ive been reading about that here and there... Hard to say if you had it first before pregnancy, or if the hormones brought it on...

[MargaretGail]

Hi Kisty, thankfully Lupus arrived after my children did. I just wanted to say how sorry I am for your loss and wish you well. X

[daisyd]

I really feel for you, I am so sorry you lost your baby. I lost a baby at twenty weeks and another one at 27 weeks. I managed to have a son born small for dates 1lb 14oz that was over 30 years ago.

I know people with Hughes syndrome have Heparin and Asprin during pregnancy, it maybe worth taking a look at that site

[Gillyg]

Poor you what a dreadful experience and your first baby. My heart goes out to you. Yes like Joanneleigh I had 2 successful pregnancies my third one was different and was the start of my Lupus. I had a successful 3rd pregnancy but at 22 weeks I threatened to miscarry but in those days I was just told to go to bed and see what happened I wasn't diagnosed for another 6 yrs after a lot of struggle. You will be very closely monitored next time so don't give up but maybe give your self a little time to grieve you have suffered a big loss in your life. When you and your body is ready give it another go look on the Lupus website and see all the beautiful babies that have been born because one day you will be one of those. My baby I struggled to keep is 32 now and has give me a beautiful Grandson. So it all works out in the end. Good luck to you and your husband. Hugs. Xx

[kirstyleigh]

Thank you so much for all your replies. Its heart warming that so many people can take 5 minutes to comment on this. Reading what all of you have put has made me feel reassured. More positive. I am currently attending counselling sessions, to help me grieve, and come to terms with what has happened. Im so sorry to anyone who has lost a baby, my heart really does go out to each and everyone of you. and also for those who have children. your very blessed and clear evidence that you can have children whilst carrying lupus. Thank you everyone. Love & light. x

[Shann07]

Hi kirstyleigh im so sorry for your loss i know you must feel so alone especially seeing other mums with newborns. That was the hardest part for me i felt like i had let my babies down my body was hopeless and i let them die. Thats 10 years ago now and i actually shed tears this morning of what could have been as my friend is pregnant with her third baby and is so carefree buying beautiful baby clothes im so jealous of her innocense. I lost my 2 baby boys one at 23 wks and one at 26 wks like you first indication was low amniotic fluid at 20 wk scan. Fast forward i got very sick with organ failure and was on life support and almost died. No tests were done for lupus but i did have all antibodies that drs didnt bother investigating. It was horrendous id been through this twice and was advised no more pregnancies at 25 yrs old. I did get pregnant again & my obs booked me in for a termination i felt pressure from him and my family to go through with it because my life was at such high risk but the night before the procedure i prayed and asked god to decide my fate i knew i could never forgive myself and would always wonder what if? I phoned my obs to his home and cancelled he told me all they could do was support me medically & me and baby had 50/50 chance of survival. I was treated with clexane injections & aspirin and scanned every week. My gorgeous baby was born 36 wks totally healthy it was the best day of my life! I went on to have another baby with the blessing of my obs and he too born at 36 wks. It was shortly after this birth my health went down hill and lupus was diagnosed. I am the luckiest mum in the world because i feel my 2 boys were sent back to me i love them so much and i risked my life to have them they are extra special I think you have a huge advantage that you are diagnosed as now drs will be able to control your symptoms for lupus and treat your pregnacy with careful monitoring. The clexane & aspirin worked for me so it should for you too. Give your body time to heal before trying again as drs tell me pregnacy puts enormous stress on a lupus patients body make sure lupus is in remission to give yourself the best start. Stay strong, nothing will ever replace your little boy and you will have many down days and count his every birthday with sadness. But it does get a little easier with time and good family support, i had some councelling too which really helped. I wish you all the luck in the world and i have no doubt you will achieve your dream of having another baby in the future x.

[kirstyleigh in reply to Shann07]

Sophieh - Thank you so much for your reply, it brought tears to my eyes as what you said you felt like is exactly how I'm feeling now. It hurts to see other mums with newborns or if i see someone pregnant. I keep thinking... why is everything ok for them and not me. Its not fair. But i feel like a horrible person for thinking those thoughts, and i would never normally, but given the circumstances its really hard not too. I am so sorry for your loss, heaven has gained such precious angels. And i believe they are watching down on us everyday. Im really happy that it worked out for you, and you got 2 beautiful children. Your a very strong person. Again thank you for your kind words. All the best. Love & light x

[behappy1]

My heart goes out too you and your partner.

Do you know if you have lupus or is that you are positive for the lupus anticoagulant?

I pray that you are blessed with a baby and that everything works out xxx

[kirstyleigh in reply to behappy1]

Thank you behappy1 - I first had my bloods done after i had my son, It was then about 6 weeks later when i had my follow up appointment, my consultant told me i tested positive for lupus. He explained that there was different types of lupus, and that sometimes lupus can be introduced because of the amount of medication a person may be on. He said that in order for lupus to be confirmed, he would have to re-test me, which would take another 3-4 weeks. So i waited and on wednesday it was confirmed, as i tested positive again. I Haven't seen or spoke to my consultant since, but he has arranged for another appointment to be made to see him. So i've just got to wait, as i don't really know the details myself. Thank you for your prayers and kind words. All the best. Love & light x

[behappy1 in reply to kirstyleigh]

Hopefully, you'll see a good rheumatologist and gynaecologist that can help you. Aspirin and Fragmin or Dalteparin injections should help in future pregnancies. Xx

[LULU85]

hi hun

Im so sorry to hear about what you have been through. I have 3 children. My first was born before I had any auto-immune problems, my 2nd was born when I had auto-immune problems but was not on all the meds im on now and my 3rd was born 10weeks ago. I did have a miscarriage between my 1st and 2nd child which is when all the autoimmune stuff kicked off. With my last pregnancy I was able to stay on the hydroxy and azathrioprine but had to be monitored by a specialist throughout as this pregnancy and my last were classed as high risk. I was really lucky and felt great throughout the pregnancy until the last few weeks ...when women normally feel at the worst due to the extra weight etc...I was put on steriods towards the end. The only problem I have had is I got an infection after my baby was born so I was really poorly with that but part of the problem there was my gp not acting quick enough when I went to see him. Its something you need to discuss with your specialist so they can advice you on the best time to try.

take care of yourself

xxxx