Pregnancy with Lupus & Hughes??? - Fertility Network UK

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Pregnancy with Lupus & Hughes???

helmamma profile image
26 Replies

Hello girls. i’ve lost any hope…maybe u here can help me. I have lupus and ttc for 7 years and I succeeded, I was pregnant 6 times but each ended up in m/c. after the 5th one I was also diagnosed with hughes syndrome (APS)…I felt really bad during pregnancies, having pre-clampsia and I was extremely sick and only once I felt better during pregnancy. I know that women can deliver healthy children, just smaller because of steroids, being in the same situation. Although i tried few times even when my lupus was on remission & still I had miscarriages. I followed dr’s prescription, had aspirin and clexane/heparine, but with no result. I can’t try again i just can’t bear one more m/c…maybe it’s a reason to find a clinic providing surrogacy I dunno…

Another thing that troubles me is even if I have a baby I think of the consequences and it’s killing me…I won’t be able to be a perfect mother, sometimes I will avoid playing with kids or if they need my help with their home assignment it could be problematic, cause mommy may be constantly tired and forget words and turn to be a psycho….oh god it may be selfish of me to even think of my own children. I remember my friend’s mother had alzheimer’s and it was horrible …please help me to decide what to do…

Love Helga

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helmamma
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26 Replies
bfrida profile image
bfrida

you are stong you know, there are a lot of oprions how to have a baby. you can choose whatewer you want . adoption or surro , everything is up to you. wish you good luck

helmamma profile image
helmamma in reply tobfrida

thank you.. i don't want to turnt to adoption, of course it's a good thing, but I can't wait for years and you know it may be even more expensive than surrogacy..

bfrida profile image
bfrida in reply tohelmamma

It's up to you, i just offer you options, i dont want to impose my view, sorry

helmamma profile image
helmamma in reply tobfrida

no, that's okay. did you face such choice personally?

bfrida profile image
bfrida in reply tohelmamma

not me but firend of mine, she adopted a child 4 years ago and she is happy right now. As for me i've experienced surro and tha't awful i say.

Blooo33 profile image
Blooo33 in reply tobfrida

Excuse me for my coming up in your conversation. I just want to share my own attitude about this matter. I think that adoption is a very noble and kind act, am not right? So many poor orphans are waiting for parent who will take away from orphanages. It's not children's guilt being with out moms and dads. They are hoping. We rightly decided (my H and I) we would adopt a little kid or maybe even twins in couple of years. Cause we’re now passing through the surro so it was our decision. I can’t carry baby and give birth because of my disease. At first it is difficultly you are living with endless doubts and head ache but when you got ready everything goes in the right way. Sometimes nature or terrible illness steals our ability to conceive or having a baby, but who can take away our opportunity to apply to the centers for reproduction. Well. I'm sorry.

bfrida profile image
bfrida in reply toBlooo33

I don't want to tell that adoption is better than surrogacy. as for me sorrogacy is very stressful and can take a lot of time and money. I'm not against it but as for me it's awful in moral ways. I'm trying to get pregnant with ivf but i'm not sure if I can pass surrogacy. I think that's crazy to know that your baby is inside another woman and she calls your baby by some name and loves he or she.

Also I feel sorry for those children who lost parents and didn't find home. But I hope that nice people will adopt them and give wonderful life. As I said, a friend of mine adopt baby. The gave all her love and care to this small life. so, I think adoption is not so bad.

Blooo33 profile image
Blooo33 in reply tobfrida

I can only cry sharing my happiness! I solemnly swear all my wrong thoughts have been vanished when I had heard about my baby's birth. I’ve got no any bad feeling towards surrogate mom only a gratefulness and respect to her. We have prepared a little gift for her, it made her happy. I must confess that in any case there is an inner barrier due to the fact that your future child is inside another woman. But now, there is no trace of these thoughts. My daughter is completely mine, even though I know that this is not really so. We spend the whole day near her crib. Infant formula, nappies, congratulations from friends from around the world. This is a great time. According to our plan we want another child. Perhaps we may adopt it here in Ukraine, but not earlier than in one year. It is necessary to destroy our selfish and disgust, and then we will be rewarded.

helmamma profile image
helmamma in reply toBlooo33

um, I haven't noticed your latest reply. so, i see you've already became a mother! Congrats!!!! like i was absent for ages....you have a child now and i still can't decide what to do...

if you want to adopt a child you must now that you can't claim for newborn or even a toddler, you know? you don't mind if a kid could be at least 5?

bfrida profile image
bfrida in reply toBlooo33

you are lucky one. I know one couple, they were waiting for a baby like for 2,5 years. Their surrogate could give a birth for a healthy child. 2 miscarriages in a row and then they changed the surrogate, finally after years of expectations they got a baby. But their journey was difficult, tons of stress, sleepless nights, nightmares. Of course, they didn't know about ukraine and had their baby in other country. If I was on her place I wouldn't do this. who knows what a life prepares for us.

helmamma profile image
helmamma in reply toBlooo33

agree with you. i thought about adoption not that i don't want a baby of my own, but maybe it's better to give someone a hope for future. i won't live forever and i know what it means to loose any hope...i think adoption of a teenager could be the best decision of mine. he won't see me useless while being too young. but i don't want to stop exploring surrogacy option.

I admire your spirit! and want to say "WOW!!"... surrogacy and then adoption, you're great! I'm sorry you've been through hard times but the way you're coping with this is worthy of respect.

When your child to be born?

helmamma profile image
helmamma in reply tobfrida

I'm sorry for not being able to reply your message. Why surrogacy is awful? what hapend? your bad experience?

bfrida profile image
bfrida in reply tohelmamma

No, not my personally. As I wrote, my friend had a bad experience but she hasn't been in ukraine. So I can't say nothung bad about this country besides we also will go there soon. It all depends on my husband. Sometimes I hate myself, I didn't want to married any guys. But I have to, because of my health, I should bear a baby, it was my time, I didn't want to be alone the whole my life. But our tries failed like a match house.

helmamma profile image
helmamma in reply tobfrida

Oh i see, hopefully you haven't faced this issue personally. I'm scaried a bit to be honest. I know there is a slightest possibility that a SM couldn't get pregnant from the first attempt or she could have a mc or stillbirth.. I'm afraid of all this. I know a clinic will provide me with another SM withing a few months or I' ll get a refund, but I don't want this to happen. I don't want to wait more than a year..I want to have the best New Year present.. but these are my darkest thought and I don't want to set them free. still trying to think positive .

Never mind. you're going to visit Ucraine? Sorry for your failed tries...really.

bfrida profile image
bfrida in reply tohelmamma

oh, darling, don't let things get you down!! everything will be ok and your surrogate will be pregnant as soon as the nature lets. Be positive and try to make yourself busy with an opportunity to think about bad consequences.

Honestly, I'm not sure about it because there is also a possibility of a surrogacy. I'm not sure about the success of a de coception, hopefully we will succeed at goal.

One more day!!!! and we will go to ukraine, I'm so excited about it, my nerves are frayed.

KGipp profile image
KGipp

Hi Helga,

I'm so sorry for all your losses. I also have lupus, was diagnosed last year. I am currently pregnant but very aware of the mc risk which is making me very nervous (I am also on aspirin and heparin). I too have thought a lot about my parenting capability with the lupus but I am currently well and decided that nobody knows what tomorrow is going to hold so I can't worry about 'what ifs'. I also have an amazingly supportive husband and family which I know will help me. I guess you are the only person who can decide how much the lupus effects your life and what impact that might have on children but, I know that lots of lupus suffers have children and manage which gives me huge hope. Take very good care of yourself xx

helmamma profile image
helmamma in reply toKGipp

Hello KGipp! Thank you for your reply, don't misunderstand me, but I'm happy to get an answer from someone who knows about my problem from own experience. I understand your concerns and I know that if tell you not to worry it won't work, actually you're the only one who is able to persuade yourself that everything's gonna be alright. when i was pregnant i liked finding stories of success with lupus and it made me a bit more calm, but you know when I encounter the one eneded up with mc or stillbirth ..this broke my heart.

You're great in your confidence to cease the moment, like you know 'carpe diem'. that's really sensible. Nice to hear that your family is so caring, it's invaluable i'm sure. Wish you all the best honey, hope to see your success story hear in 30+ weeks! hugs!

in reply toKGipp

Sorry to just jump in your post. KGipp how far in your pregnancy when they started you on aspirin and clexane? I also have SLE, Anti-Ro positive and Rheumatoid Arthritis. I had a miscarriage in early April this year. My GP and rheumatologist refused to start me on any anti coagulant until I see an obstetrician.

KGipp profile image
KGipp in reply to

I stated from the date I got my BFP and because I knew they wouldn't start it until I got the BFP I tested early. I was 9dp5dt (two days before my official test date).

KGipp profile image
KGipp in reply toKGipp

From 12 week (I'm currently 10 weeks) I will go to a joint lupus and pregnancy clinic every four weeks for monitoring. It is a clinic run by my lupus consultant and an obstetrician.

Mrsjj profile image
Mrsjj

Hi I'm sorry to read your story. I have a friend with lupus and she can be very unwell at times. She was told she will never be able to have children. She's 37 now and has 4 beautiful boys. She has days and weeks where she is really ill but her boys keep her going they are the amazing.

Keep going be strong xx

helmamma profile image
helmamma in reply toMrsjj

thank you JJ! wow...4, i can't dream of it. but how did she manage to have 4 kids?

Mrsjj profile image
Mrsjj in reply tohelmamma

I'm not sure after the doctors said she couldn't have one! All her pregancies are natural btw no help. Pregnancy was really hard for her and with at least two of the babies she was hospitalised for two weeks after the births. Can't say she has an easy time but she adores her crazy family. Her two youngest are only 1 year apart, amazing what the human body can do xx

helmamma profile image
helmamma in reply toMrsjj

Yeah, it's amazing anyways! Crazy and unbelievable woman haha. i dunno if I could be strong enough to try for a baby again and an idea of surrogacy seems so attractive to me and what is more important -it's safe. gosh, how tough this choice is

Blooo33 profile image
Blooo33

Hi, Dear! The post was published more than month ago. Maybe You have found a way out. I can’t know it. I have other problems. They related with abnormal activity of hormones. But I also can not have children. And I had several unsuccessful attempts failed due to m/c. It was hard to make a decision about surrogacy. But it was even harder to find a reliable center for reproductive medicine. We don’t have a lot of money, and we were looking for within Eastern Europe. Ukraine is quite a good option, and we are no longer afraid. Did you consider this option?

helmamma profile image
helmamma in reply toBlooo33

actually no, we didn't. hard to say what we did...still it's a mistery, what we want. surrogacy or adoption...hard times definitely. i can't make sense out of all this and we are afraid to be honest. Any choice we are to make will change everything. . .

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