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sulu

New User, Becoming EHEALTHy

Joined: 02 Jan 2004
Posts: 6

Do I Dare? (pregnancy) Posted: 01-02-04 05:37am


Hi all, i'm a newbie from denmark (sorry if my grammar isn't perfect ). I've been diagnosed with lupus and sjogren's for 4 years now. 2½ year ago I went through a very hard pregnancy with twins, but I got preeclampsia and had a caesarian 3½ month before due time. One of my sons died 14 hours after the birth, and we stayed with the other at the hospital for more than 5 months. Due to some miracle he's perfectly well today, but I have lost count on how many times the doctors told us, he wouldn't survive. Now i'm in quite a dilemma. Before my lupus started to break out, I thought I should have at least 3 children and so did my husband. The rheumy's told me that it's no longer a problem for lupies to get pregnant, but I must say I know better now. It's not that I want to get pregnant right now, I just feel it as a great loss to give up the thought of more children totally. On the other hand I couldn't bear to loose another child or to live month after month in fear as I did with my boy, who survived. Have any of you experienced the same dilemma? Sulu

el725

New User, Becoming EHEALTHy

Joined: 30 Sep 2003
Posts: 49
Location: Florida

Do I Dare? (pregnancy) Posted: 01-04-04 18:46pm


Hi sulu, i, too, had a premie because of eclampsia and other complications caused by my lupus. My girl was 2 - 21/2 mo early. We had some scares, but ultimately she only had to stay in the hospital for a month, and she's been perfectly healthy. She graduates from high school this year. When she was about 2, I desperately wanted another baby. I hadn't been diagnosed with my lupus yet (although i'm sure I had it then), so we went to a gynecological and neonatal specialist for consultation. At the time, they told me there was a 30 - 50% chance i'd experience the same thing in a second pregnancy. ( how they came up w/ that percentage I don't know) I didn't think the odds were too bad & I wanted to go for it. My husband, on the other hand, was not willing to take a chance on losing me or a child. He couldn't imagine choosing to go through that again. Truthfully, even though I was the one who was ill, he went through so much. So I didn't push for another baby. A few years later when I had to have an ovarian tumor removed, I had my tubes tied. Even though I know we made the right decision, I don't think a longing for another child will ever go away. It weighs heavily on me now that I think about my girl going away to college next year. But I try to make myself think about what I would have missed out on if a second pregnancy had disabled me or killed me. I also think about the pain we spared ourselves if we had had another premie and weren't as fortunate as the first time. That was a long time ago, though, and if I had to make the same decision now with the medical advances and the correct diagnosis for myself, I don't know that I choose the same thing. Ultimately, you have to decide what you can live with and remember your decision affects your child and your husband, too. I don't know if this helps you, but it did help me to write about all of my feelings i've been having lately. Thanks. lizbet

sulu

New User, Becoming EHEALTHy

Joined: 02 Jan 2004
Posts: 6

Posted: 01-05-04 08:46am


Hi lizbet, thanks for answering. It do help to hear that i'm not the only one who has been in doubt. I know my husband is afraid to loose me - he has already been told 2 times when I was ill that they didn't know if i'd survive, and one of the times was when I had the preeclampsia. The doctors have told us that I should be very lucky to have a normal pregnancy. They said I will almost certaintly give birth too early - the question is only how early. Theý said that the risk for given birth as early as 3½ month before again is 25%. My biggest concern is also what would happen if we weren't as lucky as last time? Our child could be blind, deaf, braindamaged...It would be very hard for our family; hard for the little boy we already have, and such a child would need more caretaking than a normal child, and with my fatigue i'm afraid I wouldn't be able to give that. i also worry about if it's fair to try to be pregnant when I know there's a chance that the child will be very braindamaged due to early birth. Is it fair to that child to take the risk? What kind of life would it have? On the other hand I have a perfectly normal and healthy boy at home now - there's also a chance that we could be so lucky again? Do I cheat myself by being so scared? Do you think a lot of your longing? Or do you somehow learn to reconcile with 'life'? Sulu

el725

New User, Becoming EHEALTHy

Joined: 30 Sep 2003
Posts: 49
Location: Florida

Do I Dare? (pregnancy) Posted: 01-06-04 07:02am


Hi sulu, i could identify so much with all the things you wrote in this last post. The answer to your question about how much I think about my longing is that it does not consume my life. I think certain things trigger it--like when I think about my daughter leaving next fall. What has made it worse lately is that my younger sister just found out that she's pregnant after thinking for the last 15 yrs. That she couldn't have any more children. We were the ones in the family who had only 1 child (odd for my family), and you know how misery enjoys company. So even though i'm thrilled for her, it kind of stings, if you know what I mean. I would say, that for the most part, I have adjusted to and accepted my situation. I guess I can kind of relate it to grieving for a lost loved one. My dad died 16 yrs ago. If I sit and dwell on his death, I get really sad and miss him, but in my day to day life, that sadness doesn't overwhelm me. Ultimately, I believe my life is in god's hands, so I think that helps me the most to cope. Hope this helps. Lizbet

sulu

New User, Becoming EHEALTHy

Joined: 02 Jan 2004
Posts: 6

Posted: 01-08-04 12:46pm


Hi lizbeth, thanks again for sharing your thoughts with me. I do help a lot. sulu