To avoid risks in pregnancy

[leahb133]

HI everyone, I am new to this board and SOO glad I came across it. I have lupus which, thank the Lord is in remission right now but I was just pregnant and we ended up losing our baby girl becuase I had to do an emergency c section at 6 mos and she was too tiny to make it ( i had pre eclampsia and it was decided that for my health they would have to take her) Well me and my husband definetly desire kids. qWhat have you found helps you along in your pregnancy to avoid things like this?? We just couldn't handle another burial of one of our children. Thanks so much! style_emoticons/<#EMO_DIR#>/Thanx.gif

[cath]

Dear Leah,

I'm so very sorry for your loss (((((((((((Leah)))))))))))))))

That is really tough

Unfortunately women with Lupus have higher rates of pre-eclampsia than non lupies, and in your case it went badly style_emoticons/<#EMO_DIR#>/aww.gif . Before you get pregnant again, you really need to see an obstetrician who deals with high risk pregnancy and discuss the risks for next time. An appointment with your rheumatologist is also due, as this (the pregnancy, the caesarean, the PET) might send you out of remission. At least you should get checked out. I will keep you in my thoughts.

Having had pre-eclampsia once does increase your chances of having it again, but it is by no means a certainty. Take your time and when you feel up to it, get the neccesary advice, and then do what you feel is best for you.

I wish you all the best style_emoticons/<#EMO_DIR#>/hugbetter.gif

Welcome to the forum

Keep posting!

X C X style_emoticons/<#EMO_DIR#>/sad.gif

[pnutts]

Leah,

I am so sorry to hear about your loss. I have had two successful pg while having lupus. It's a lot of work though.
I was seeing a perinatologist along with my regualar OB each week, and also seeing my rhuemy about every 2 motnhs. Do your research and find dr. that have specialized with lupus pg. My peri. wife had lupus so I knew he was well aware of all the risks.

The first pg I didn't have preclampsia but this last pg I did. Once I hit 30 weeks I have having an u/s every week along with an nst. It was a lot of visits but well worth it in the end. I also had to lovenox injections to keep my blood from clotting.
LIke I said it's a lot of work but with the help of the right dr. it's highly possible.

Good luck

Cath

[leahb133]

Thanks for the replies. Yes unfortunately right before all that happened (a week before) is when I was goign to start seeing my OB and having ultrasounds every week etc. But I guess we did it a little too late. It was kinda out of the blue that it happened... the rest of the pregnancy everything was perfectly fine so it caught us completely off guard. I just really have to have faith that we will have a successful pregnancy, I dont' care if I have to stay in bed all 9 months.. but I really want a baby style_emoticons/<#EMO_DIR#>/sad.gif

[beauty]

sorry to say ....but thats not lupus...sure don't sound like it to me....my story is the same....toxemia very earily...and in ICU at 6 month....stayed till 7 months EM c-section.....except my baby made it 17 days before she passed....from infection prem. baby's get......I was told she was so tiny do to antiphopholipids.....APS...she was on;y 1lb and 5 oz......baby stopped growing ....if you having been checked for that yet please due....b/c thats what it sounds like to me...I do now have two kids...afte being treated on the right med......blood thinner helps stop the clots ....so baby keeps growing...two shots a day in the belly for nine months during preg.....if you have any Q email me....I'm sorry for your loss..and if you need a shoulder...i'm here....find a good dr...

good luck carla

[lostangel]

Hello Leah,

I am so very sorry for the loss of your baby girl. I also suffered the loss of my daughter earlier this year due to me having APS. She was stillborn at 37 weeks. I understand how very difficult it is. I have been on aspirin since we lost her and when i get pregnant again i will have to be on daily heperin injections. I feel lucky to be diagnosed after just one loss as many women have to endure multiple loss before they are even tested. Im sorry i cant advise you on your situation. If you ever need any support with regards to your loss there is a wonderfull website i use called www.babyloss.com it is for parents who have lost their child due to misscarriage, stillbirth, cotdeath or any other accidental causes. There are women on there in your situation.

I hope you find some answers.

lots of love and luck to you. love ali xxx

[Clare.T]

I'm very sorry too for your heart wrenching loss.

We need high risk care from the get go even if we are in remission as pregnancy is a time when all sorts can rear ugly heads.

Find out if there is evidence of anti phospholipid syndrome, also if you have the anti- Ro antibodies which can sometimes cause problems for the baby, albeit rarely.

Best of luck for next time

Clare

[leahb133]

I was on blood thinning shots but I wasn't as consistent with them as I should have been... I don't blame myself for her death though .. I feel that God had it in His plans regardless. Sorry if I offend anyone by talking about God, but I feel that He always has a plan and unfortunately it wasn't in his plans for us to have Jada style_emoticons/<#EMO_DIR#>/sad.gif I believe that could be it, the problem with the clots because they were saying there wasn't enough blood getting down to her and thats why she wasn't growing. SO what I am understanding from what you ladies are saying, taking the shots consitently helped with a successful pregnancy??

[beauty]

yes....blood thinner is a must ...and i would have them check u for antiphopholipids...just in case...any q email me at bret@ccrtc.com good luck
carla

[Clare.T]

Yes : there is no guarantee of success even with treatment ( for anything ) but following the doctor's instructions exactly gives much better chances.
The blood has to be thinned in the hope of avoiding clotting which can damage the placenta stopping the baby getting adequate nourishment. I was told by a top APS specialist that one third of this sort of placental failure is die to APS, one third to other causes and one third unknown.

Lupus can coexist with APS so there can be the additional risks such as pre-eclampsia.

Remember never to take any advice from forum members instead of medical opinion from expert doctors who know your case.

By posting on the forum there is a better chance of getting broader feed back.

Best of Luck

Clare

[believe]

Hello Leah,

Sorry about the recent loss. style_emoticons/<#EMO_DIR#>/hugbetter.gif

My Rheumy wanted the Lupus to be stable for at least 6 months first off. When the labs were quiet
and the lupus relatively stable, I got the green light. I had consulted with the perinatologist a year
prior and discussed all the risks involved.

Since I have the SSA-Ro antibody, I had the fetal echo every week at certain stages during the pregnancy.
I have also had the anticardiolipin antibody in the past, so I took aspirin daily up till a certain point.

I was followed by the Rhuemy, ob/gyn, perinatologist, and pediatric cardiologist. I had an excellent team of doctors for the whole pregnancy.

I had an IUGR baby, but he is fine. He was 5 pounds 4 oz and 17 1/2 inches, He had a very critical blood sugar- 3 and a repeat of 7. His pediatrician said it's the lowest blood sugar she has ever seen in 20 years. The neonatologist said it's due to the vasoconstriction of circulation to the placenta, caused by the lupus. Consequently, the hypoglycemia and super small baby was the result. He is in the 3rd percentile.

He is 3 months old and super cute now. We knew the risks and we have been blessed.

I wish you the best and hopefully this has been helpful.

style_emoticons/<#EMO_DIR#>/foryou.gif Believe

[LizBL]

<div class='quotetop'>QUOTE(leahb133 @ Dec 12 2005, 04:39 PM) Quoted post</div><div class='quotemain'>
HI everyone, I am new to this board and SOO glad I came across it. I have lupus which, thank the Lord is in remission right now but I was just pregnant and we ended up losing our baby girl becuase I had to do an emergency c section at 6 mos and she was too tiny to make it ( i had pre eclampsia and it was decided that for my health they would have to take her) Well me and my husband definetly desire kids. qWhat have you found helps you along in your pregnancy to avoid things like this?? We just couldn't handle another burial of one of our children. Thanks so much! style_emoticons/<#EMO_DIR#>/Thanx.gif
[/b][/quote]


Hi,

Im yet un-diagnosed with SLE but not with APS. I lost Jacob who was born sleeping, back in Jan 2002 at 17 weeks. I then lost Joshua and Olivia before the found I had APS. I was put on 75mg asprin and once pg injected 20mg clexane. Sophia was born by em-section in march 2004 and is healthy. Sadly I lost another son Joseph in Aug 2005 even with treatment of 300mg aspirin and 20mg clexane. I've been advised if I want to try again, that they will increse the clexane to 40 mg but nothing is 100%.

Good luck
Liz

[damarissmith21]

Dear Leah:

I know what you are going thru. I had lost nine as of sep. 2005. I had tried aspirin, blood thinners twice a day and hemoglobulin infusions and nothing worked. I have lupus and a blood clothing disorder that not even a hematologist can do anything about that. After trying so many doctors in different countries my last one advise me not to try again because it could be fatal for me. My husband talked to me and told me that what was the point of having a kid if something could happend to me, and how resentfull he was going to be with a baby if I wasn't there. I felt so frustrated, a baby is what I wanted. Lucky, one of my sisters when she found out she offered to be my surrogate mother. Genetically all my eggs are fine so she will carry our baby in three months, which is about how long it takes to put the 2 of us in the same cicle. The are always alternatives, but always think that whatever you do you have to be as healthy as possible to take care of that baby that you want. style_emoticons/<#EMO_DIR#>/wavey.gif