Thursday, June 24, 2004

No Choice

Work is going to be a problem. When we had decided to do IVF in July, it was because I didn't want to wait any longer and because it would be while I was on summer break from school. I'm working on this big project and will be flying next week for a few days and a day for the week after, and I've been trying to arrange it all around my IVF schedule. Now they are wanting more travel and I will try to again slip it around and between ultrasounds, but I'm not sure how much I can. This is not easy. How can people work and do all these appointments without telling their bosses?

I've decided to use pseudonyms instead of initials for the people around me to make these notes easier to read and write. We'll call my daughter Janie and my husband Matt. My best friend is Valerie. I mentioned Valerie before in that she's the usual person I go do to talk about my thoughts and worries but I can't right now. She's dealing with her own things and doesn't have time to take on mine.

Basically, Valerie's first child, a girl, was still born around the same time as 9/11. She almost died herself a week later of pulmonary embolism. It was discovered that she had a genetic blood clotting disorder. Unknown to her and her OB, her placenta had been filling with clots and starving her baby of vital fluids, then it had the same as a heart attack. Once the placenta died, the baby died, and she had to deliver her. It was horrible. The doctors hadn't realized there was any problem with the baby because Valerie had fibroids that were growing during the pregnancy, so her belly was always sized correctly. Also, she had never had any health problems so didn't know she had this genetic disorder.

She got pregnant a few months later and because of twice daily lovenox injections, almost weekly ultrasounds, and the care of the best perinatologists in the state, she had a healthy baby boy. A few months later she was pregnant again, and underwent the same level of care and monitoring. She had problems at 7 months and ended up in the hospital. Her daughter was born about a month ago, 3-4 weeks early, and was diagnosed at birth with Down's Syndrome, and a hole in her heart that will need surgery at 4 months.

Valerie was the most monitored pregnant woman in the world and had more ultrasounds than anyone. Her triple screen blood test had come back normal. Her ultrasound measurements were normal. She's 30 years old. Her problems have been because of her blood condition, not anything to do with the babies. The doctors couldn't get a good look at the heart during the 18 week ultrasound. The first doc marked the file and the next doctor a week later couldn't get a good look either, but he didn't mark the file. The ultrasounds on the weeks after were for exactly that, and never trying to check the heart again. I think they were so concerned with the blood condition and fluid levels that they missed this other problem. She believes that if they would have found the heart condition that is common with babies with Down's, they could have told her she had higher odds of her child having it and to get an amnio. She believes she would have ended the pregnancy had she known, and I believe her. I think I would do the same, even if I had spent all my money on IVF to get that pregnancy. With her, the choice to stay pregnant always means putting her own health at risk, and the shots, and the constant monitoring. Pregnancy is not the same for her as it would be for me or anyone else, it's also dangerous. Although, I don't think the choice to end the pregnancy would have been just a handicapped child wouldn't be worth the danger, but because she didn't intend on raising a child with Down's. It's a much higher commitment than just having a child. The Down's wasn't diagnosed until after the baby was born, so she had absolutely no choice. To find out in the recovery room after her dangerous c-section (breech baby), I think is barbaric. She said she started screaming. They tried to get her to be quiet because of the other mothers who were also recovering, but she didn't care about them. They would go home with their healthy babies.

She talked about adoption, but she felt that her daughter may not get a good home because of her condition and could end up raised in foster homes and/or abused. Besides, things are different once they're born. Her daughter is beautiful, they sucker you in when they're babies. I could talk on and on about terminating pregnancies due to Down's, but really, chances are you'll never be faced with this issue personally so it's very easy to say what you would do. Valerie loves her daughter, but she wouldn't have had her had she known. It's too much. Now that she's here, she's love her and raise her and give her the best of everything, but it's something in which she was never given a choice to undertake. I still can't believe that can still happen in our so-called modern society.

This week she has to meet with some social worker because of I think social security for the baby, and she has doctor's appointments for her too. In the meantime, there's always her 1 1/2 year old son who is very active and far more demanding. There's more too, but I think you get the idea that with two little kids under 2, one with special needs, and all of what should have been, she's going through her own thing right now. I try to be patient and let her call me instead of calling her, but I'm not that patient. I miss her and want to see how she's doing, so I usually try her once a day. That's about how often we used to talk since her first baby died and before her last one was born.

She got her tubes tied and her husband had a vasectomy. They get pregnant so easily that they wanted both bridges burned. I announced that we were finally the more fertile couple. We liked to joke about how combined we made the most fertile woman and the most infertile woman since she could conceive so easily but had trouble pregnancies, and I couldn't conceive but once pregnant I was fine.

With Valerie, I can be myself. Pessimistic, bitter, snarky, and hopefully supportive. There aren't too many things I haven't told her, and she still seems to accept my flawed and mean self. Truth is, I don't have that many friends because I don't want to open myself up and I don't have time to spend on cultivating new relationships. I also don't want to hear about how wonderful everyone else's life is. You and your husband have never fought? You've never mourned the loss of your pre-children self? After you were married and had a child your life was complete and you never wanted for anything more? Hmm, excuse me, I think I have some place I should be.

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