Miscarriage

[billyette]

Hi, I'm new here, just hoping you'll have some stories of hope for us....
My twin sister has two forms of Lupus. She has been in and out of hospital for the last 2 and a half months following the discovery that her kidneys are now being affected. Shortly after her treatment started, she discovered that she was 12 weeks pregnant with her second baby. Two weeks later I found out that I was pregnant too. Yesterday we heard the devastating news that she had lost the baby at 20 weeks. The whole family are absolutely gutted. I feel completely useless and incredibly guilty that I am still pregnant and Lupus free. I'm sure my sister felt that this was her last chance to have a second child as they warned that if the medication didn't hold, they would have to use something stronger which causes infertility.
I just wondered if anyone else has been through something similar with a happy ending? What can I do to help my sister get through this?

Thanks

[Deborah Rumbles]

Hi really sorry to hear about your sisters miscarriage, I have 2 sons aged 15 and 13 but 5 years ago i lost a baby at 16 weeks due to my sle as well and it hurts so bad even now, nobody can say if she will be able to carry a baby, I really hope so and that she can be well during the pregnancy, My kidneys are involved with my sle so I was advisedf not to try again by my rheumatoligist and now I am on methotrexate and with this can never fall pregnant as it harms the fetus, my husband has had a vasectomy as it was too much of a risk for my health to have any more kids, I think your sister need your love and support and also include her with your pregnancy as this will help her I'm sure, she also need to talk to her rheumy, all the very best of luck with your health and your sisters.

[helloos]

Hi there.

I am sorry to hear about the loss of your sisters baby. I think the guilt that you feel would be somewhat normal. I also think that as time passes by, that will go away. A life brought into this world - brings only joy.

The positive side to all of this is that she has a child. That does bring comfort. I have a friend who has tried, tried and tried with no success and that brings some sorrow.

I think that you should be honest with your sister and tell her how you feel and she will wrap her arms around you and tell you not to feel that way. Just as you feel for her I am sure she feels for you. Just by being there for her and helping her out when needed even with her other child, making sure she gets the best treatment and support, is the best thing for her.

I think that you should try to get rid of this guilt and focus on your baby and being there for sis. It is not your fault and it is not her fault. I understand your pain though, but do believe that talking with your sis will help you both out a lot.

Remember what I said - a baby can only bring joy.

Plus she will be an aunty!

[cath]

Dear Billyette,

Hallo and Welcome. I am really sorry to hear about the struggles your family is going through at the moment. It must be enormously difficult for you.

I can understand that you feel guity, but please know that logically you are in no way responsible for your sister having lupus or for her losing her baby. I can understand you would love to have been able to protect her from the pain, but unfortunately you can't - and just by being there to support her you are helping her get through it I'm sure.

Was your sister seeing an obstetrician for her care? Normally when a baby dies this far into a pregnancy there are a lot of tests done to work out why, including screens for infection, genetic disorders and clotting disorders. These will take a while to come back, but may give your sister some information as to why this happened. Sometimes though despite the tests there is no good reason found - it is just a tragedy with no explanation.

IN your sister's situation she had a definite risk factor - active lupus nephritis. Her body may have just been too sick to cope with the demands of the pregnancy. There is another possibility that they have almost certainly checked for - APS or antiphospholipid syndrome. It is a clotting dissorder that many people with SLE have. It typically causes miscarriages both early and late (20 weeks is a late miscarriage). If she has this, her chances of a sucessful pregnancy in the future will be better if it is known about. Known APS can be treated in pregnancy with asprin and heparin to prevent a clot forming in the placenta. This really reduces the miscarriage and stillbirth rate for women with APS.

If it was her kidneys (or the active lupus) that caused the miscarriage, once the disease is better under control hopfully she will have a better chance of having a succesful pregnancy. She needs to just concentrate on herself and getting better first though. One of the medications used to fight kidney lupus can sometimes cause infertility (cyclophosphamide). If the doctors want to use this drug and it is really important to your sister to have another baby in the future, she could ask about having some eggs frozen just in case her fertility is affected.

Lupus makes pregnancy high risk. Women with Lupus need to be looked after by an obstetrician who has experience with high risk situations.
Unfortunately there are no garantees, but with good medical care many women have succesful pregnancies with lupus. When your sister feels she wants to think about "next time" (and don't push her), she should discuss her plans with an obstetrician.

IN the mean time, be gentle with each other and take care of yourself too. Your own pregnancy is a strain on you too!

Thinking of you all,

X C X

[billyette]

Thank you all so much for your kind words and information. Just knowing that there are people out there that understand has been very comforting.

B