misc.kids FAQ on Miscarriage, Part 1/3

misc.kids FAQ on Miscarriage, Part 1/3	brook006 at mc.duke.edu
misc.kids FAQ on Miscarriage, Part 3/3	brook006 at mc.duke.edu
misc.kids FAQ on Miscarriage, Part 2/3	brook006 at mc.duke.edu

From: brook006 at mc.duke.edu Subject: misc.kids FAQ on Miscarriage, Part 1/3 Date: 29 Dec 2004 05:26:41 GMT Archive-name: misc-kids/miscarriage/part1 Posting-Frequency: monthly Misc.kids Frequently Asked Questions Miscarriage Part 1 of 3 --------------------------------------------------------------------------- Collection maintained by: Laura Brooks (http://scalos.mc.duke.edu/~brook006) Last updated: March 16, 1997 --------------------------------------------------------------------------- A Little History In the spring of 1994, I had my second miscarriage in a row. Anxious to learn more, I posted a message to misc.kids, asking for information and moral support. I got a lot of both, along with the suggestion that I look at this FAQ. After awhile I consolidated the mail I had received into a large addition to the FAQ, and the woman maintaining it at the time asked me if I would consider taking it over, so I did. I added my changes and made it available over the WWW (http://wdg.mc.duke.edu/~brook006/miscarriage.html). Since then I've occasionally made revisions to the Web version, but not as frequently as I'd like. I have recently made an attempt at reorganizing the FAQ, by breaking it into sections. One section has words of support, one has technical information, and there are also smaller sections dealing with bleeding, molar pregnancies, and how long to wait before trying again. By far, though, the largest section is made of personal stories, sent in by other readers of the FAQ. This brings me to a dilemma. Every story is different, and each deserves to be told. Reading other peoples' stories, I know, is one thing that helped me to not feel so alone when I was going through my own miscarriages. However, the FAQ file has grown so large that it could only be posted to the Usenet in 7 or 8 pieces. Furthermore, it continues to grow, and change, and I don't want to have to limit that growth. Therefore, I have decided to break out the personal stories into their own file. You may access this file at: http://wdg.mc.duke.edu/~brook006/stories.html, or send mail to me at: brook006@mc.duke.edu and I will send it to you. Occasionally people send me mail asking for advice or with specific questions. This is OK, but the only information I'm qualified to give is an account of my own experience, and a little moral and emotional support. I don't have any medical training or special "insider info". I'm just someone who's been there, twice, and lived to tell about it. I'm also happy to report that my third pregnancy was successful, and our daughter Sarah was born in March of 1995. As a result, I'm a lot busier now than I used to be, and wouldn't mind passing the maintenace of this FAQ on to someone new. If you are interested, please e-mail me at brook006@mc.duke.edu. Thanks a lot... How to Contribute If you have information not covered in this FAQ that you feel could be of use to others, please send e-mail to me at brook006@mc.duke.edu, and ask me to add your comments to the FAQ file. Unless otherwise requested, your name and e-mail address will remain in the file, so that interested readers may follow-up directly for more information/discussion. To contribute your story, see the instructions in the personal stories file (http://scalos.mc.duke.edu/~brook006/stories.html). Other Resources There are some very good other resources on the net, which may be able to provide you with more specific data, or interactive support. * The Miscarriage Support & Information Resources page (http://www.pinelandpress.com/support/miscarriage.html) * The Recurrent Pregnancy Loss Testing page (http://www.pinelandpress.com/support/rpl.html) * The SPALS mailing list (Subsequent Pregnancy After Loss) (http://www.inforamp.net/~bfo/spals.html) * The SANDS Home Page Stillbirth and Neonatal Death Support (Western Australia) (http://hedgehog.highway1.com.au/~lawtbm/sandshome.html) * The Growth House Miscarriage page (http://www.growthhouse.org/natal.html) * The Grief, Loss & Recovery page (http://pages.prodigy.com/gifts/grief.htm) * The Usenet group soc.support.pregnancy.loss * The Usenet group misc.kids.pregnancy --------------------------------------------------------------------------- A Rough Table of Contents * Words of Support * Causes and Technical Info * Bleeding During Pregnancy * Molar Pregnancy * How Long to Wait Before Trying Again * Other Resources --------------------------------------------------------------------------- Words of Support --------------------------------------------------------------------------- Just Those Few Weeks For those few weeks- I had you to myself. And that seems too short of time To be changed so profoundly. In those few weeks- I came to know you... And to love you. You came to trust me with your life. Oh, what a life I had planned for you! Just those few weeks- When I lost you, I lost a lifetime of hopes, plans, dreams, and aspirations... A slice of my future simply vanished overnight. Just those few weeks- It wasn't enough time to convince others How special and important you were. How odd, a truly unique person has recently died And no one is mourning the passing. Just a mere few weeks- And no "normal" person would cry all night Over a tiny, unfinished baby, Or get depressed and withdraw day after endless day. No one would, so why am I? You were just those few weeks my little one You darted in and out of my life too quickly. But it seems that's all the time you needed To make my life so much richer- And give me a small glimpse of eternity. By Susan Erlin --------------------------------------------------------------------------- My friend gave me the most valuable perspective on miscarriage and I would like to share it with those who could use it most. Most people believe that when they miscarry they lose out on ever knowing "that child." My mother, who miscarried before having me, always told me that I wouldn't be here if she had not lost her first. My friend feels differently. She says that the souls of children find their way to the right parents, and that miscarriage occurs when the soul of the child was not ready, for some reason, to enter, or renter, the world. When a healthy baby finally arrives, it is the same spirit as the one that was lost, finally ready to join its family. I know it is unorthodox, but it helped me tremendously after my miscarriage. I just wish our child would do what it has to to get ready! Good luck to all of you. --------------------------------------------------------------------------- I was very sorry to hear that you have lost your baby. I can't imagine what it must be like for you and your husband. You had a little being that was growing closer than anything had ever been to you before, and now you mourn because it is no longer there. You will probably be blessed with another child in the future. It will not be the same as this first one that you have lost; no other child will be the same. Time and the closeness you have with your husband will probably help to reduce the hurt. I'm sorry. --------------------------------------------------------------------------- I know the combination of pregnancy and miscarriage and finally my daughter has changed me, deepened me, more than I ever thought possible. I can't say that I'm glad that I lost a child, but I can say that I believe that people who experience life intensely, both the good and the bad, are luckier than those who just drift through. And in that sense we women are lucky, far luckier than men. Men will grieve, and will sorrow, but it's not the same. When I had my miscarriage I think I was most worried about whether there was something "wrong", about whether I would ever be able to carry a child to term. I thought about the IUD I had in for my wilder years. I thought about the years I was too serious about swimming and didn't have periods. I thought about the stretch where I was too thin. I thought about everything I'd ever done that was less than healthy. I suppose the bottom line was that I haven't failed at many things in my life and I didn't like it very much. But then along came my daughter and the misery drifted away, with only a little bruise to show for it. And for some reason I wasn't worried at all during the second pregnancy. I guess the statistics about miscarriages and first babies really don't lie. But in some sick way, it has all helped. When my brother's baby died this year, I knew what to do. And that ability to empathize, to experience all the ups and downs, is what life is all about. Really and truly. --------------------------------------------------------------------------- People say the strangest things when they are trying to comfort me. I suppose you got that too. Why would people tell me it is for the best? How can this possibly help me? Why would they go out of their way to say it isn't so bad for me since I hadn't been pregnant a long time? I know I will get better; I hope I will get pregnant again soon, but I think these things are for me to say, not for them. I know they are trying to be nice, but I don't care if my baby wasn't viable: it hurts just as much either way. I don't care to have my pain minimized or swept away. Someone helped me yesterday: I talked to a wonderful doctor right after I lost the baby (she just happened to be on call). I told her it was quite ironic, but though I had never met her, I was scheduled to talk with her on Tuesday because I was interviewing doctors for OB care. She told me to come on in anyway, even though I lost the baby. I did. She was great. She spent half the time talking to me about this loss, and half the time telling me about her philosophy of labor and delivery and preparation for birth. After I left, I realized that she got me back to concentrating on the future in a very gentle but practical way. She told me I would probably be nervous and antsy when I first get pregnant again and she encouraged me to come in early just to get confirmation and a feeling that someone knew I was nervous and was going to watch me and be aware of my concerns. Don't get me wrong: I am not saying this woman magically fixed everything, but she did help some. I still cried last night, but I feel positive potential in my future. I worry. I will worry. But I hope too. --------------------------------------------------------------------------- I talked a lot to my sister-in-law when I had my miscarriage. She kept telling me the same thing over and over: "Remember, it's nothing you did. If lifting heavy things could cause a miscarriage then there would be an epidemic of 14-year-old female weightlifters in New York City." It's true. If there were anything at all that could cause a miscarriage, desperate people would have found it. And if any sort of bad health habits could set you up for this kind of thing, then the birth rate in inner cities wouldn't be so astronomical. Your body's fine, and you'll be pregnant again before you know it. --------------------------------------------------------------------------- Just thought I'd let you know that my sister-in-law had two miscarriages in a row, and did the same as you, had the fetal tissue tested. For her, it was also the trisomy-16 problem. The doctors told her the same thing your doctors told you. Her third pregnancy was just fine (yea!), and she now has a 9-month old daughter. Hope this makes you feel a little better! (it DID!!!) --------------------------------------------------------------------------- I don't know if this will help you or not, but something you may want to add to the list. I have had several family members and friends who have had problems with pregnancies. One thing that seems to be common is that when a child was lost (still born, cord accidents, etc.), the woman had a miscarriage less than a year later. In some ways, I've always wondered if it was a way of her body just "making sure" since all these women went on to have a healthy child about a year later. It is hard and tragic to lose 2 children in under a year. Support groups and counseling have been what kept some of my friends & family going. The things that were most valuable to them were: a) take time to grieve. You lost a child. It doesn't matter if it was born or not, YOU STILL LOST A CHILD. b) Remember life goes on. If the doctor says there are no problems, wait and try again. Almost everyone who has had a miscarriage hears from women who had one (or more) or knows someone else who had one. An example I use a lot in comforting friends is my mom. There are 6 kids in my family. In 1946 (or 47) my mom had a tubular pregnancy and lost her right fallopian tubes. The doctor told her she'd be lucky if she ever got pregnant again. Eight pregnancies later (6 kids, 2 miscarriages), she asked the doctor to put her on the pill since she felt she was "too old to deal with baby shit." ;) When my youngest sister was born, they brought a bunch of med students/interns in to marvel at the two of them. In my family alone was my mom & her problems. My brother Steve & his wife had a blue baby who died the day after he was born. Mari miscarried 6 months later. They adopted a boy and she gave birth to their second son 1 year to the day after Adam came home with them. They currently have 4 kids ranging from 5 to 13. My brother Gerry's wife miscarried and later had a wonderful and healthy boy (Nicky the human noodle). I contracted rubella in the first trimester of my pregnancy and lost that baby. I now have a healthy 2 year old and I am due in February. My husband's sister miscarried 3 times before they had their first son. They currently have 3 kids (ages 2 to 6) who are healthy and normal. One of my good friends describes herself as "not built for pregnancy." She had several miscarriages and had to have an abortion once when the fetus was literally killing her. Her pregnancy with her daughter left her hospitalized several times in her first trimester, but her daughter is a thriving 3 year old now. Last year, she gave birth to her son and had a hysterectemy immediately after. She claimed it was an easy pregnancy since she was only hospitalized once before her due date. My best friend from college lost her first son. He died as the result of massive birth defects 2 weeks after he was born. She miscarried 9 months later and a year after that had a beautiful baby girl. I could go on, but I won't. I just want to pass on examples of encouragement. I hope they are useful. They seem to have been for some friends. ("Please tell me you know someone who survived this and has children," tends to be the biggest request from them.) One thing that helps too (at least with my friends) is breaking things. Buy a bunch of "yard sale china" and smash it. Take out your anger and frustration on something like that instead of your husband & family. MOST IMPORTANT: The man is grieving too. Many people make sure the woman is fine and forget about the man. My brother Gerry said the best thing that happened to him was receiving flowers from me to him. Everyone seemed to have left him "outside" when it came to comforting. I remembered how much he helped me when I lost my first and wanted to do something for him. When one of my friends had an ectopic pregnancy recently, I sent her husband a plastic fish full of goodies. She said it made a big difference to him. Men grieve too. While the wife goes through medical and emotional trauma, the man feels the sense of loss and helplessness as well. Make sure they don't get ignored. karla Shapiro karla@shiva.com --------------------------------------------------------------------------- I too had three miscarriages in a row. May 93 (12 weeks LMP), December 93 (10 weeks LMP) and March 94 (10 weeks LMP). Now I have a 15 month old. I had the 4 standard tests as well in the spring of 93. I have no advice, just some reassurance that for me, and lots of people I think, the problem resolved its self. I remember how horrible it was to try not to have your hopes up and try not to analyse every symptom or missing symptom. And I hated it when people told me to relax. But what I can say is that the pregnancy that resulted in my daughter was totally unplanned (we were taking a break for the workup and moving to another city/job etc) and I didn't worry about it at all because I didn't know until 8 weeks LMP. Good Luck! --------------------------------------------------------------------------- Causes and Technical Information --------------------------------------------------------------------------- **The following is from an actual M.D. on the net, but he did not give permission to use his name**: First let me express my condolences at your loss. It makes no difference what the gestational age is, there is still the loss of a pregnancy, and this will result in grief and the need to work that through. Trying to find out 'why' is part of the grief work. Let me reassure you that your experience is VERY common. I see similar cases every month in my practice. The problem is that experience with the vaginal probe ultrasound is very limited, and to extrapolate the presence of fetal cardiac activity on vaginal probe ultrasound to previous reassuring statistics about discenment of cardiac activity by abdominal ultrasound (doppler) or earlier auditory auscultation (stethescope) are not valid. Most spontaneous abs occur prior to the 12th week, and a very short time ago, cardiac activity was not discernable prior to the 12th week with any degree of regularity, so the common statement was "Once we hear the fetal heart we don't worry about miscarriage." But now we are using a more sensitive technology and this trueism will not hold up. So I can only encourage you to work thru the loss of this one, and have confidence that you will conceive again with success. And another bit of advice is to wait at least 4 months before trying again. We have good studies that indicate the risk of repeated SAB is much greater in the first three months after a previous miscarriage. --------------------------------------------------------------------------- > I would like to find out more about what the chromosomal test actually > involves, and what they might be able to find out from it. They will count the chromosomes to see if there is the right number (46). They will look to see if the chromosomes are complete, with no missing parts. They will look to see if part of one chromosome has broken off and rejoined another chromosome. They will look for any kind of abnormality they can find. Chromosomes in eggs and sperm are at a somewhat higher risk for getting things screwed up because they undergo a process called "crossing over" where, for instance, chromosome 1 from your father and chromosome 1 from your mother may swap equivalent parts, leading to a new combination of genes on the resultant chromosome 1's. This is good for the species, but when things don't go quite right, it's bad for the individual that will inherit those chromosomes. Most of the time when this happens, the conceptus or zygote is completely incapable of normal development, and either never implants or dies within a few days of doing so, and you never know about it. But some limp along until some critical gene that has been damaged is needed, and then they die in a first trimester miscarriage. Because the chromosomes can be seen with an ordinary microscope, any large rearrangements or duplications/omissions can be easily detected, and the cause for the miscarriage known. > Also I would like to talk to other people who've had tests run on > themselves and/or their spouses. I would also like to hear from people > who's progesterone levels were too low to support a pregnancy (my OBGYN > doesn't think it was that but hasn't ruled it out - I keep wondering about > it because it happened to my sister-in-law). It would be helpful to know when your miscarriages occured. Through most of the first trimester, progesterone is produced by the corpus luteum---the "scar" left behind when the egg popped out of the ovary. It produces progesterone because it detects chorionic gonadotropin (HCG) in your blood. The HCG is produced by the part of the embryo that later becomes the placenta---the trophoblast, in scientist-speak. For the first 10 or 11 weeks, a progesterone insufficiency would be due to either the trophoblast not producing enough HCG, or the corpus luteum not responding with enough progesterone. For instance, my mother miscarried all three times between 8 and 11 weeks, and never had any morning sickness with any of those pregnancies, but she did get it when she had her four children. My personal opinion of this is that the first 3 embryos were not producing enough HCG to sustain the pregnancy for whatever reason, since the first trimester nausea is often correlated with HCG levels. It's difficult to use morning sickness as an indicator though, because women vary enormously in their sensitivity to it. Some women can have raging levels, and have no morning sickness, and some will still be vomiting from the low maintenance levels in the 2nd and 3rd trimesters. Anyhow, getting back to established fact, HCG levels in a normal pregnancy rise dramatically until about 2 months (this does vary though), and then begins to drop off as the corpus luteum ages and becomes incapable of producing hormones anymore. The placenta by this time has become mature enough and large enough to produce its own progesterone, and it ramps up production as the corpus luteum is winding down. If these two events are not quite in sync, you can experience a slight dip in progesterone levels, and since rising progesterone levels (absolute level doesn't matter, it is the rate of change of levels, which is why progesterone levels continue to rise throughout pregnancy) keep the uterus relaxed, contractions that expel the fetus can result, just like at birth. Rates of miscarriage decline the further along in pregnancy you get, except that there is a slight spike right at the end of the first trimester, when this switcheroo maneuver is underway. > And finally, I would appreciate hearing from anyone with any information > about women developing antibodies to their fetuses, and how common (or > rare) this is. And basically, just anyone else who has anything to tell me > at all that might be helpful. It's very rare. It's not precisely known why all pregnant women don't develop antibodies to their fetuses, since they are, after all, foreign tissue. The theory is that the placental interaction between the cells derived from the baby (placenta) and the mother's cells in the uterine wall induces the fetus to produce an enzyme that damps the immune response at the interface. Theoretically, certain "markers" are used to determine where the immune response is supposed to be dampened, and the cells do a little comparison between themselves and their neighbors on these markers and if they are different, then they produce the enzyme. The difficulty (again, theoretically) is when the father coincidentally has the same set of markers as the mother, then the fetus' cells look just like the mother's cells when the comparison is done, and no enzyme is produced. The mother's immune system could care less about these markers, however, and the other differences between mother and fetus trigger an immune reaction and antibodies are produced. Again, this is all theory, nobody knows what the markers are even if they exist, but what is known is that a woman who consistently has an immune reaction against fetuses fathered by one man will be able to carry a fetus fathered by another man (say by artificial insemination) to term quite nicely. The man will also be quite capable of having children with another woman. Your practitioner probably did a blood test that included a white cell count, and possibly other measures of immune system function. If you are rejecting the fetuses, you may experience similar symptoms to an immune reaction to just about anything else---a fever, feeling sick (not necessarily nausea, but the same feelings you get whenver you're battling the flu, a cold, or other infection---being very tired, loss of appetite or a ravenous appetite, etc.), and the evidence of your immune system fighting an invader may show up on your blood test. But it also may not unless it is being explicitly looked for---if some of the theoretical enzyme is being produced because at least one of the markers is different, then the immune response may be weak enough not to show any symptoms, but still strong enough to kill the fetus. I hope this hasn't been too dry and technical for you, and I hope it's been helpful. Myself, I cling to the example of my mother, who had so much heartbreak and then was rewarded with four wonderful kids (if I may say so myself :). --------------------------------------------------------------------------- Ok, so, if we're going to try to look for an answer to why these miscarriages occured, we'll consider the facts. On a gestational age basis, the first embryo died somewhere around 5 weeks old (LMP is approx. 2 weeks longer than gestational age). At this age, the embryo is about 1 centimeter or 4 tenths of an inch long. The second embryo died at about 6 weeks old, and is a little over half an inch long at this age. Important to note is that the embryos died well in advance of being expelled. If there were a hormonal problem, the embryos would have been alive and well, but the uterus would have expelled them anyway. Usually (though not always) in cases of the mother's immune system attacking the fetus, the placenta suffers the most damage, because it is the part directly connected to her. Bleeding from the damaged placenta almost always precedes such a miscarriage. So this is unlikely to be the cause. When the embryo just up and dies like this, it is usually because something has gone wrong (either chromosomally or developmentally), and the embryo is simply incapable of continuing on. It's pretty amazing that development ever goes totally right. The first weeks are an incredibly fast and furious process of cells dividing, migrating, bending, making seams, all having to be highly orchestrated to happen at just the right time. If something doesn't happen quite right, the embryo may die or be born with profound defects later on. However, it's quite unusual to have 2 miscarriages in a row with this cause. There's about a 1 in 20 or 25 chance of this happening in any given pregnancy, and to have it happen twice is like drawing a ball from each of two bags of 25 numbered balls and having both balls be number 25. It's a very low chance, but somebody has to be the unlucky one, I suppose. --------------------------------------------------------------------------- [I sent eMail to someone on the net whom I knew from earlier postings to be a geneticist, asking him about the chromosomal test - his answer:] I am really sorry to hear about this situation with you and I hope that my notes can expand your information base so you can ask better questions to your doctor. To begin with, I would double-check my statements with your doctor/genetic counselor in regards to the SPECIFICS of your INDIVIDUAL case. When a miscarriage occurs, a cell tissue is taken for this test and grows for a period of several days which can vary according to cell type: blood, bone marrow, amniotic fluid. This is called "growing a culture" which will take a number of days. For example, I am learning the procedure this week and last Friday, I took my own blood and let it grow until Tuesday. On tuesday, I activated the cells to grow at the same rate by adding certain chemicals. After that I blew up the Red Blood cells and removed the waste to leave behind only the White Blood Cells. This is done because Reds do not contain any DNA while White do. Thursday, I will take this purified blood sample and fix it onto a slide where I can analyze it. By using a microscope with a computer screen, I cut apart the chromosomes and sort them according to type. This results in creating my 'karyotype' which I will print out & in the case of other people return this data to their doctor. WHAT CAN THEY TELL? Good question. I do not know your age but most expecting mothers over 35 take this to find out if their child has Downs. This is detected by an extra 21 chromosome in the cells fixed to the slide which reflects the baby/patient depending on source. Other errors are able to be detected are extra chromosomal numbers such as 69 or 92 but this is VERY unlikely and I highly doubt this is your situation. I suspect you can not help but suspect the worst but well..wait for the results. In regard to why, they may test you and the father? Well, sometimes about 1 in 200 people have balanced translocated chromsomes which in simple english means that no genetic info was lost but people have a chunk of their chromosome 3, for example, attached to chromosome 5, for example. This looks odd compared to others in a 'karyotype' but the cells do not care so long as all the genes are present. If the baby has a balanced translocation in the test, they will want to know if it was new for the baby or you have it as well. I won't be that surprised if I have this myself so don't panic. But most likely, their is no genetic reason for this miscarriage but a result of other reproduction factors. I MUST STATE THAT I AM ONLY A BIOCHEMISTRY SENIOR AND AM LEARNING THIS PRODEDURE but I hope that this info makes you feel more informed with your situation. --------------------------------------------------------------------------- The hardest thing is finding that there is often no one or no thing to be blamed--it just happens and nobody knows why. Give yourself lots of time, as recovering emotionally is not unlike recovering physically--just because wounds are felt rather than seen doesn't mean that there hasn't been damage that will take a while to recover from. In a real sense, this is a death, so you may need to mourn and grieve for a while. Take lots of time with yourself emotionally as well as physically. And, by all means, if you are uncomfortable with your OB-GYN--you're not getting answers to your questions, etc.--find another one immediately. > And finally, I would appreciate hearing from anyone with any information > about women developing antibodies to their fetuses, and how common (or > rare) this is. This is all very new stuff, so there isn't a whole lot of data around. As I understand it, in order to strengthen the blocking response of the placenta, white blood cells (a half unit) from the (prospective) father are administered to the mother, and then they try to conceive again. While some reports of the succes rate are as high as 70%, I don't know that the sample is large enough yet to be significant. There are, for example, other studies that have shown that psychological counselling was also effective--again, the data sample is small, so it's hard to tell how significant a result this might be. My wife and I had the white cell stuff done in Richmond VA and we now have an 18 month old son. Clearly, *something* worked--even though we didn't have the full course of treatment that the Richmond people wanted. But now, we're having troubles even conceiving again--which wasn't the slightest problem before. > And basically, just anyone else who has anything to tell me at all that > might be helpful. It's not your fault. Even though it happens in your body and to you, it's not your fault. It hurts like hell, but these things just happen, the way asteroids sometimes slam into the Earth. Boom. Stuff flies. Things get killed. It's nobody's fault. It just happens. We pick up and try to go on... --------------------------------------------------------------------------- Last week my husband and I suffered through the pain and disappoinment of a "missed" miscarriage. Simply put, this condition is caused when the body fails to recognize that the cell cluster which has implanted has not become a viable embryo and so continues to go through the motions of supporting a pregnancy. For about a month after the pregnancy test was positive, my husband and I thought about and planned for our baby. The fact that our dream was shattered so soon didn't make it any less heartbreaking. The reason I thought I'd write you, though, is to publicize the method used to help us move on. You see, it was awful enough to try and accept the news that the growing pregnancy sac we kept seeing on the ultrasound monitor was empty and that it always would be. Still worse was the fact that we had to select the method for ridding my body of the pregnancy support system still growing in my uterus. Option one was to let nature take its course. It might have been weeks, though, before my body recognized there was a problem. The choice would almost certainly have ended in a trip to the hospital for an emergency D&C. We did not need the expense nor the trauma of this option. The second option was having a scheduled D&C. We believed that this choice sounded good because of the fact that it would be done under safe, controlled conditions and under the peaceful sleep general anesthetic provides. By contrast, the third option of a reletively new office procedure would cause all the cramping and bleeding normally associated with a miscarriage, induced by a drug not FDA approved for the purpose. We were prepared to choose the scheduled D&C when we arrived at the doctor's office for a final ultrasound. We said that we wanted to make the choice which would be best for my physically AND mentally. He was certain that the office procedure fit the bill. He went on to list the risks of a D&C: perforation, infection, extensive bleeding, and a 2% chance that it would have to be repeated. The office procedure also had a 2% chance that a followup D&C would be required, but there was no chance of perforation or infection since the procedure was non- invasive... and he was ready to do it then and there. (It was a real blessing that we didn't have to go home and dwell on it for a day or two.) At about 6:00 PM the painless, five minute procedure was performed. A small pill was broken into four pieces. (This drug IS FDA approved for other uses, but it was explained that no matter how much pain, suffering, mental anquish and money this procedure would save women, it was still technically an abortion and no drug would be approved for abortion use. The doctor went on to say that the FDA has never approved any drug for use during pregnancy either - not Tylenol, not TUMS, nothing. He added that if doctors had to wait for the FDA to approve everything obstetricians would have nothing to use at all! Procedures and drugs, then, are chosen based on results found in medical journals. This one has been used with increasing frequency and with excellent results.) The pieces of the pill were placed around my cervix - painlessly - and held in with a tampon. I was sent home with a prescription which we filled immediately. I ate a small dinner, took one of the prescription-strength Motrin, and waited. About 8:00 the cramps started. By 10:00 I had become very uncomfortable, but my husband gave me lower backrubs which helped immensely. I was further diverted by a good movie on TV. The cramps were no worse than the intense ones I'd suffered through during my teenage menstrual cycles. (I only took that one Motrin.) I went to bed at 11:00 and slept soundly. In the morning it was over. I was amazed to discover that the bleeding had already tapered off to little more than spotting. At my recheck that evening, the doctor found signs (through ultrasound) of only a small bit of tissue remaining, which he was almost certain would pass on its own. (Sometimes a second treatment is needed, but it results in much less cramping since the uterus is almost emptied and nearly back to normal size). I will have to have weekly QHCG (blood) tests until my level returns to zero (indicating that a D&C will not be necessary). In the meantime, my husband and I are on StressTabs with Zinc and prescription-strength Folic Acid to prepare for our next try. I'll be filling my new Clomid prescription soon, and I already have an appointment for mid-June so my period can be started by injection if it hasn't already done so on its own. In short, we might be pregnant again by the end of next month! (There is no good medical evidence, according to the doctor, that suggests that waiting more than one cycle will improve our chances for a healthy pregnancy. In fact, he believes that the knowledge that we can try again so soon greatly enhances our emotional well-being, a factor that is also very important.) There isn't anything that anyone could have said to make this experience any less heartbreaking for us. We knew we didn't do anything to cause the miscarriage, nor could we have done anything to prevent it. Still, we can't deny the fear that it might happen again. We know that the people who told us "it was for the best" and "at least you know you both work" were only trying to help, but we wanted to scream each time we heard that. In fact, the only good thing about all this was how fast and easy the doctor made it to move on. No hospital visit, no paperwork, no recovery room. It was fast, it didn't hurt (other than the cramping, which is short-lived and not too terrible), we saved a fortune, and my husband and I went through it together in the privacy and comfort of our own home. I don't know under what circumstances the procedure can replace a D&C, but having had both now, I can say that this is DEFINATELY the way to go. We will always be grateful to this doctor for coming as close as any man can to understanding what it's like to be a woman in this position. Elizabeth Foss nfn04287@naples.net From: brook006 at mc.duke.edu Subject: misc.kids FAQ on Miscarriage, Part 3/3 Date: 29 Dec 2004 05:26:42 GMT Archive-name: misc-kids/miscarriage/part3 Posting-Frequency: monthly Misc.kids Frequently Asked Questions Miscarriage Part 3 of 3 --------------------------------------------------------------------------- Molar Pregnancies --------------------------------------------------------------------------- This is what I know, for starters: Most miscarriages are of the types "fetal demise" (where the fetus dies) or "blighted ovum" (an egg is fertilized, and a placenta starts growing, but the fetus fails to grow, so there is only a placenta and an amniotic sac). Much rarer are molar pregnancies, which are a type of blighted ovum where an abnormal spongy mass grows on the placenta. Partial moles much rarer than full moles. When a molar pregnancy has been diagnosed (the tissue extracted during the D&C is sent to a pathology lab), the first course of action is to make sure all the growth has been removed. This is done by doing weekly, then monthly pregnancy blood tests. This is cruel test to do to a woman who is dealing with the aftermath of a miscarriage (personal opinion). Three negative weeks in a row means going to monthly tests. Three negative months is a row means the patient is "cured". If the test do not go to negative, this indicates that the growth mastesised (spelling?) and that there is tissue growing elsewhere in the body. According to my doctor, the usual course of treatment is then chemotherapy. It is therefore imperative that the patient not become pregnant again until declared "cured" (since obviously a subsequent pregnancy would make it impossible to determine if there was any other growth). It is usually recommended that you wait at least a year before attempting another pregnancy. I am hoping that someone out there has gone on to have a successful pregnancy after a molar pregnancy, since I could use some encourage- ment when we get around to trying again. Thanks for your sympathy. As many people are aware, a miscarriage is certainly a painful loss. Dealing with a non-viable pregnancy is hard, too (I often felt like I had no right to cry over a baby that never was). Dealing with the additional issue of whether chemo will become necessary while dealing with the other parts is hard, too. Especially when a lab technician just knows you need a pregnancy test and starts making small talk on the assumtion that you are hoping for a positive. Later Addendum: Since the time that i wrote the original letter to Tracy, i have completed a successful pregnancy (and she'll be 2 on Sunday!) So, I really don't need encouragement at this point, but if anyone reading the FAQ has had a molar preg. and would like to correspond, I would be glad to be the moral support end of an exchange. Maureen Busch mbb@world.std.com Mom to Jody(7/27/86), Sean(11/1/88), and Rachel(8/6/93) misc.kidding since '87; '95 PA pg 25, '94 PA pg 18, also in '93 PA --------------------------------------------------------------------------- How Long to Wait Before Trying Again --------------------------------------------------------------------------- Another reader posted a message to the net asking for advice on how long to wait after a miscarriage before trying again. The following is a compilation of her responses. Please remember that this is only opionion, and that you should first and foremost follow your doctor's advice... --------------------------------------------------------------------------- In reading misc.kids during the year since my wife's miscarriage, I've decided there just isn't any consistency in the advice. My wife was 34 last year when she miscarried. Our doctor told us to wait until she had had one period before trying to conceive again. We did exactly that. That was her only period. She got pregnant again right away. That baby boy, our second, was born January 21, 1994, and appears to be perfectly healthy. More healthy than our first, in fact, who is missing a kidney. --------------------------------------------------------------------------- I want to tell you, that I had 3 miscarriages since 1992, and I had to have 4 D&C's since then. I had a appointment with an endocrinologist, and he told me to wait at least 1/2 a year before the next try. First I couldn't understand and I started as soon as possible with all the testing. Now I feel that this 1/2 year is not too long to get the emotional healing that I needed so much. --------------------------------------------------------------------------- The "three month wait" is sometimes suggested because it can take your body a little while to get back on a regular menstrual cycle. If you wait three months your physician has a better chance of coming up with a reasonable due date. But it isn't always necessary, and if there's any doubt about the due date now they can clear it up with ultrasound. So if you were told you didn't have to wait three months, it's perfectly all right to start trying again as soon as you're ready. (This was what my doctor told me.) I got pregnant again the first month after, and despite a difficult pregnancy, there was never any threat of another miscarriage. And my baby is six weeks old now, a healthy beautiful little boy. There didn't seem to be any problem caused by getting another baby started so quick. --------------------------------------------------------------------------- The standard waiting period of three months (for the first miscarriage--if you've miscarried before, the waiting period goes down--I'll explain later) was designed mostly, IMO, for the expectant parents to deal with their emotional grief. Waiting for one cycle makes very good sense medically in terms of waiting for the uterine lining to completely heal, etc., and so that if you get pregnant, it's easier to "date" the fetus from LMP. If you jump right in, generally, ultrasounds, etc. need to be performed in order to get a correct dating for the fetus. I have miscarried twice. The first time, my OB said "wait three months." (I was 29 at the time.) The second time, just this past summer, at the age of 33, I was told to wait 2 cycles, though 1 cycle would suffice. Friends of mine who have infertility problems are told not to wait at all (that is, not to wait for a complete cycle; they should at least wait until the physical cramping, etc. is gone) because it's so difficult for them to conceive anyway that waiting just prolongs the agony. I hope this helps. You have my complete sympathies on your miscarriage. It's never easy, especially after you've daydreamed about life with baby, etc. I do know, from my experience, that the second one was easier emotionally (though tougher physically, because it required a D&C) because we have a healthy son. --------------------------------------------------------------------------- As far as I know it's all folklore. It's one of those "might help, can't hurt" things. Different doctors, different suggested waiting periords... my gyn suggested two months. --------------------------------------------------------------------------- Ah, yes, confusion. I know it well. Here's one example for you: I lost a pregnancy at 8 weeks while on vacation; the older OB at the hospital there said to wait for three normal periods before trying again. Since I wanted to time the next baby so that I'd be home in the summer when my older kids are out of school, that would have meant waiting a whole year -- and at 33 I didn't like that idea. So I asked my regular doctor when I got home. She said that the wait wouldn't make much difference, except for trying to estimate the due date! So we did try again, and lost another just 8.5 weeks after the first. That ended hopes for a maternity leave the next summer. Now aiming for the following spring/early-summer, we waited 10 months, conceived in August, lost again in September, and conceived in October. Ultrasound done in December resulted in an estimated due date in early July, suggesting the conception had occurred just 3 weeks after the spontaneous abortion. Another ultrasound in June revealed a very low lying placenta which would have made a normal delivery dangerous, so a c-section was scheduled. The result - a healthy baby girl, quite well developed for the estimated gestational age. --------------------------------------------------------------------------- I have had two miscarriages. The first was at 11 wks LMP and then I was told to wait until after two menstrual periods. The Dr said that this helped in knowing when conception occured because I would know how long my cycle was and when my LMP happened. I had the same Dr. after the second miscarriage (3 months after the 1st), and he gave me the same advice. Due to selling the house and moving, we didn't try for about 6 months. The third pregnancy carried to term and now Kenneth will be two in June. --------------------------------------------------------------------------- I had a friend, mid-thirties, miscarry her first baby. The doctor told her to wait a few months to give her body a rest. She wanted to wait because it had been traumatic emotionally, and she wasn't ready to risk that just yet. Well, she and her husband are not good at birthcontrol. She didn't get her next period, and she delivered a beautful baby girl nine months later. Every woman is different. I think (as a mechanical engineer and general busybody) that the correct time to wait is as long as you need. If you are ready to try again and your body is healthy, I say go for it. --------------------------------------------------------------------------- In response to your posting about how long to wait after a miscarriage... I had miscarriage 10/1/93 at about 9 weeks. I did have a D&C though. My doctor advised waiting 2 periods. Luckily, my period started exactly 4 weeks after. The dr. had said it could be 4 to 10 weeks! So I waited 2 cycles and started trying again. Some people I spoke with thought 2 months wasn't enough, but my Dr. did so I took his advice. I am now 9 weeks pregnant and am pretty nervous, but I'm taking it one day at a time and hoping for the best! Good Luck, I know how difficult it is. --------------------------------------------------------------------------- I am sorry about your miscarriage. I too miscarried at about 6.5 weeks (in September, 1991) & was concerned about how long to wait before trying again. I was 32 at the time I miscarried. Like you, we received various recommendations, even from different doctors. After reading up on it and talking to my brother (who is a general practitioner & does a fair amount of OB-GYN work), I concluded that the recommendations to wait are based more on the need for time to recover psychologically than the body's need to recover physically. I had suffered from infertility & it had taken me over a year to get pregnant, so I didn't want to wait any longer than necessary. I did wait until I had one period (which was 7 weeks after the miscarriage) to try. But then, much to our surprise, I became pregnant again right away. Our healthy son was born a little less than 11 months after my miscarriage. --------------------------------------------------------------------------- I was told two periods. When I asked the doctor if I could move that up, he said it probably wouldn't hurt anything but recommended that I take multivitamins or better yet prenatal vitamins (and to eat healthily) right away to make sure that my blood had enough time to recover. --------------------------------------------------------------------------- Other Resources --------------------------------------------------------------------------- The three best books I had were "The Well Pregnancy Book," "A midwifes Guide to Pregnancy and Childbirth," and "Preventing Miscarriage: the Good News." --------------------------------------------------------------------------- Well, I don't know if this will be helpful. There is an organization called Pen Parents, who provide resources and support for all kinds of pregnancy and subsequent loss. Their address is as follows Pen Parents P.O. Box 8738 Reno, NV 89507-8738 1-800-484-1033 code 7332 In their "synopsis" that I recieved, there is a brief description of several other groups that also provide resource and support. One of them is called HOPE (Helping Other Parents Endure) and the address is listed as... C/O Pauline Montague 4833 Straume Ave. Terrace, BC V8G 2C8 Canada The description of HOPE that follows is..." A newsletter by and for parents who have lost a child through miscarriage, stillbirth or neonatal death...." Another one... Pregnancy and Infant Loss Center 1421 E. Wayzata Blvd. #30 Wayzata, MN 55391 (612) 473-9372 "The PILC is a non-profit organization offering support, resources, and education on miscarriage, stillbirth and infant death..." There are more listed, if you would like me to post them. Am sorry to hear of your situation. Please keep me posted...I'd like to know if you've found any help through these sources. --------------------------------------------------------------------------- Add to your list of books ``Coping with Miscarriage'' Unfortunately, I don't have the author's name, and it was a library book, but I found it very reassuring after my miscarriage. Lynn las@ai.mit.edu --------------------------------------------------------------------------- The best book I found on pregnancy loss was "Ended Beginnings". There are 2 authors, one of which is Cathy Romeo, the other I can't remember now. It was stronger in terms of positive possabilities for emothional healing than other books I read. Jan Stetson mailto:jstetson@bbn.com --------------------------------------------------------------------------- I have a book on preventing miscarriage that tells stories of women who had up to 8 miscarriages before giving birth to healthy babies. In case you care, the name of the book is "Preventing Miscarriage: the Good News." It details all sorts of things. One thing the book mentioned that I had never thought of was that sometimes the same problems that make it hard for a couple to conceive also make it hard for the mother to carry to term. I found it interesting reading, but sometimes the words that were meant to be encouraging did not encourage me. From: brook006 at mc.duke.edu Subject: misc.kids FAQ on Miscarriage, Part 2/3 Date: 29 Dec 2004 05:26:42 GMT Archive-name: misc-kids/miscarriage/part2 Posting-Frequency: monthly Misc.kids Frequently Asked Questions Miscarriage Part 2 of 3 --------------------------------------------------------------------------- Causes and Technical Information (cont.) --------------------------------------------------------------------------- I read your post to misc.kids about having 2 miscarriages in a row, and really feel for you. Unfortunately, I had 3 miscarriages in a row (after having a previous normal pregnancy, which made it all the more puzzling). I will be glad to share my experiences with you, but I want to relate a some things first: You said you realized there is not always a reason. Not true! I said the same thing, and our doctor (a specialist in recurrent miscarriages) said there is always a reason, the problem comes in finding the reason. Also, it may be helpful for you to contact RESOLVE. RESOLVE is a support/education/advocacy group for infertile couples. I'm not saying you are infertile, but someone like me (after 3 in a row, I am considered infertile - unable to carry a pregancy to term) is. They have lots of good information on miscarriages, and there are lots of opportunities to get in contact with people you have or are going through similar experiences. I don't have their phone number with me right now, but will get it to you if you want it. Now to our situation. We have a little boy who will be 4 at the end of May. I got pregnant in April of 1992, and everything seemed to be going fine. The ultrasound we had at the time of the amnio showed a beautiful, normal miniature baby. Then, inexplicability, the baby died in utero. I began to get nervous after a while, because a friend at work was pregnant at the same time (we were due 2 weeks apart), and she was feeling lots of movement. I was actually standing in front of the mirror in the mornings, looking at my breasts, asking myself - "Are they getting smaller?" I didn't say anything to anyone, thinking I was exhibiting hysterical pregnancy fears. Well, the water broke at 19 weeks, and I aborted. Thankfully we got to the hospital in time, and it happened there. The pathology showed nothing abnormal, and all my OB could tell me was a guess - a cord accident. A rare, random event. That reasured us somewhat, so we tried again. We lost that pregnancy at about 8 weeks, and lost the third at 10 weeks (that was May of 1993). Well, by that time we said "Enough is enough!" and we found an excellent doctor in Boston who specializes in recurrent miscarriages. My mother in law sent me a newspaper article after the second miscarriage in which the reporter interviewed this particular doctor. I hauled it out and read it after the 3rd loss, and that gave us a name. I then talked to people at RESOLVE, and he was highly spoken of. He is Dr. Joseph Hill, a reproductive endocrinologist at Brigham and Womens Hospital. Here is a description of the tests he ordered for us: 1. Chromosomal analysis of my husband and myself. He said that a chromosomal abnormality in one or both of us could result in recurrent losses, but that this was not too common. This involved drawing a blood sample from both of us. Everything was normal. 2. Endometrial biopsy. This involved removing a sample of the lining of the uterus just before my period started. The development of the lining was assessed to determine if I had a leutal phase defect (ie levels of hormones not right to support a pregancy). By the way - I am not a medical person, and do not have my reference materials with me as I write this, so my explanations my be off somewhat! This was uncomfortable, but not overly so. Some women feel more discomfort than I did. I believe they told me to take motrin before the procedure to minimize discomfort. This was normal. 3. Hysterosalpinogram (spelling?) also called a 'Tubogram' - during this procedure, a dye is injected into the uterus, and the radiologist takes photos to assess the condition of the fallopian tubes (open, closed) and the uterus. Abnormalitites in the shape of the uterus can cause recurrent miscarriages. This was normal. Some women have quite a bit of discomfort with this, but it was not too bad for me. They had me take antibiotics prior to and after the test. This was done to prevent infection. 4. Blood tests for anticardiolipid antibodies and lupus anticougulant antibodies. This was also normal! Tests 1-4 are the standard tests that are performed during an assessment of recurrent miscarriages. During our initial visit, Dr. Hill said that a large proportion of couples are not diagnosed by these tests. He then proceeded to say that he has developed a theory of recurrent pregnancy loss, in which the women's body views the early placental tissue and/or the early fetal tissue as foreign objects. The white blood cells then attack and cause a miscarriage. He has developed a blood test that detects what he calls 'embryotoxic factors'. It is my understanding that these 'embryotoxic factors' are proteins given off as part of the process of attack by the white blood cells. Please remember my previous disclaimer! He said that of the couples who test negative during the standard tests, 80% test positive for the embryotoxic factors. Well, I tested postive for the embryotoxic factors, followed his treatment, and am now beginning the third trimester of a healthy, normal pregnancy. I will be glad to send you details of the treatment, but it is basically rather high doses of progesterone during the first 20 weeks of pregnancy. There is no danger to the fetus. Doctor Hill said that physcians have been prescribing progesterone for recurrent miscarrianges for years, without really knowing if it would work. The thinking was that it couldn't hurt. Well, they may have been treating this condition without realizing it. We naturally asked him about our normal first pregnancy, and the fetal demise. His theory on this is that when the baby died and stayed in the uterus (for as long as 2 weeks, maybe) that my body became sensitized to pregnancies and attacked the subsequent two. He said a normal pregnancy changes the women's immune system to keep itself from being attacked as a foreign object (which it is, being composed of half your partner's genes). Doctor Hill said his treatment has not had the benefit of a double - blind, placebo controlled study because he has not been able to get the funding for such a study. He does believe there is "something to it", though. The women at RESOLVE said he has a high success rate, and that 4 or 5 years ago, when he was just getting started with this, that his waiting room would be clogged with frantic women looking for help. He has modified his office procedures a lot since then, and the situation is busy, but much more orderly. Another empirical verification came from a doctor at the same hospital who is using a special ultrasound technique to study blood flow around the fetus and placenta of women who suffer recurrent losses. Her subjects come from Dr. Hill, and are under his treatment, and she said a problem (for her, not for me) is that there are very few failures (miscarriages) so she doesn't have much data! That was reassuring. I don't know how much reading you have done on the subject of recurrent miscarriages, but a recent theory says that the woman and man can be too close to each other genetically, and that some sort of injection into the woman can help (I don't know too much about this theory). Anyway, Dr. Hill said that has recently been debunked. This theory was promoted by a doctor in Philadelphia. Another thing - Dr. Hill has said that if a couple is in their 30's and has had 2 miscarriages that they should consider having a workup. I don't know your situation, but it is something to keep in mind. Yet something else - Don't hesitate to go to a specialist! You may like your OB/GYN just fine (like I do), but don't feel you are being disloyal by going to a specialist. After the 3rd loss, by OB/GYN said "I can't help you with this". So off we went, and are we glad! Please pursue this with as much vigor as you can muster, and don't give up hope! I have just dealt with the medical aspects of my experience here, not the emotional. Please let me know if you care to exchange notes on the latter. Best of luck and let me know how you are doing! --------------------------------------------------------------------------- Got your message. I'm glad you are seeing a doctor who wants to start testing soon. The tests on me took 1 cycle to complete, which was much faster than I had thought. I should think that your body has to readjust a bit before the more invasive procedures are done, though. In the newspaper article on Dr. Hill, he said progesterone was described in the '70's as 'nature's immune supressor', and that is why they looked at it as a possible treatment for this condition. We asked him why he chose the dosage he did (50 mg progesterone twice a day via vaginal suppositories (ugh)). He said that in the lab they added progesterone equivalant to that dosage to the blood of women who tested positive for the toxic factors, and they (the factors) disappeared. He said there is no guarantee that the levels of progesterone in the women's blood would be the same, however, because each women's body is different. He said if the woman miscarries under his treatment they increase the dose of progesterone in hopes that will deactivate the toxic factors. The blood test he uses is, to my knowledge, different from the usual tests for antibodies (I *think* the usual tests are for the anticardiolipid and lupus anticougulant antibodies - may want to ask your doctor on this). I think he is the only person doing this test, and do not know if he does it 'long distance'. Dr. Hill and another doctor co-authored a chapter of a book, and it deals with miscarriages (causes, treatments). He gave us a copy to read, and I his theory is described there. I'll try to get the reference for you (and your doctor?) if you want. --------------------------------------------------------------------------- Here is the information on the book: Kistner's Textbook of Gynecology. 1990. It will be updated this year. Hill's secretary got the information for me, and when I asked her if she had the publisher, she just laughed. I guess she considered herself lucky to get that information from him (he's busy!). It has been good to correspond with you. Please keep me updated on how you are doing, and how the results of the tests come out. You are doing the right thing by being an active participant, because you and your partner have the most to gain and the most to lose. --------------------------------------------------------------------------- Dreams and Realities by Nancy P. Hemenway Reflecting back on a hot morning in early August, I distinctly remember the eager anticipation of the long awaited culmination of my hopes and dreams in my marriage to David. I was 38 and I had kissed a lot of frogs before my prince came along. Hearing the loud ticking of the biological clock was enough to throw caution to wind (along with our birth control) a whole 2 months into our marriage! My only concern at this point was that I might get pregnant too fast and our "honeymoon" would be cut short! When nothing happened the first year I became concerned but realizing we were both healthy, active individuals, I pushed that thought as far away as possible attributing it to works schedules and bad timing. Another two birthdays and no pregnancy. Then in July while on vacation in Florida I realized my period was late. David and I rushed to a local drug store for our first of many home pregnancy tests. Postive! ! I couldn't believe it! We were finally going to have a baby. Unfortuanately, we were both a little naive and innocent about pregnancy. At about 7 weeks I started spotting so we rushed to the Dr. and had an ultrasound. The results were alright and everything looked fine. He told us 20% of pregnant woman bleed. The spotting continued and the cramping began. The next sono revealed a problem with the sac and the doctor told us I was "threatening a miscarriage". My heart was in my knees but I managed to pull myself together and push these negative thoughts out of my head. At almost 10 weeks we had another ultrasound. The doctor told us the baby was growing again and the sac looked ok. We lost the baby the next day in the hospital emergency room. Having come from a background in nursing, I asked for genetic testing of the fetus. I was told because it was only my first pregnancy they would not do this. I also believe they attributed the loss to my age (41). The genetic testing I never had could have been a major diagnostic link with the problems we have now been diagnosed as having. Several months after my first miscarriage I referred myself to a reproductive endocrinologist who tested both of us for every disease know to man (and woman). Over the next two years, we went through ovulation induction with all the drugs, had numerous IUI's (intrauterine insemination) and finally three cycles of IVF. We were again, overjoyed, when I got pregnant on the second cycle. This pregnancy ended at about 6 weeks. The Quest For a Diagnosis Through all the testing I never had a diagnosis. The doctors never found anything wrong with either my husband or me. "Unexplained Infertility", that's what they call us. We're healthy, active people, "the perfect couple" except we can't do what 90% of the rest of the couples can do. I am not the kind of person to settle for "unexplained", so I set out on my own personal quest to, at least, explain why I couldn't get pregnant or stay that way once I achieved a pregnancy. I searched the internet for articles and read everything I could on infertility. I commiserated with my "sisterhood of infertility" on the medical support bulletin board of Prodigy. One of the women on the bulletin board had a similar history to us and sent me some research studies. I couldn't believe what I was reading. Dr. Alan Beer of the Chicago Medical School in North Chicago Illinois had been studying the immune system as it relates to reproduction for about 20 years. I read about women (just like me) in many parts of the studies. I gathered up the information and took it to my doctor. He told me this was rare and he didn't think I had these problems. I decided to refer myself to Dr. Beer. After a review of my chart, he told us we were indeed candidates for problems in this area and ordered blood tests to be done. Not only did we have these problems but Dr. Beer told us they were about as "bad as he knows they can get!" My new diagnosis was : Habitual Aborter. Dr. Beer had discovered we have three major problem areas: Blocking Factor Problem, Antiphospholipid Antibodies, and Natural Killer Cells. Blocking Antibodies One out of every 200 - 300 couples who marry and start a family will share similar tissue types to their spouse. Basically this is a white blood cell (WBC) problem. In the WBC system symbols relate to different types of cells. The last 4 symbols are called the DR / DQ numbers . these DR/DQ numbers are inherited . Couples who lose every pregnancy are matched for 3 out of 4 of these number (symbols). David and I found out that we are an "unlucky match". Our DR / DQ numbers are 1.1, 1.2, 1.3 and a 4 . There is little more than one amino acid's difference between us. This means we are 75% alike. As you know the WBC system is our defense against disease. Each of the above numbers within the WBC system have little antennae which when touched by a certain virus or bacteria sends signals to make antibodies. These antibodies take care of any foreign interlopers (bacteria) entering the body. The man has all the genes (in his sperm) to blueprint out the placenta. He starts to build the placenta . This sends a message from outside of the woman's body (from the genes within the sperm) to alert the mother's body to prepare for a baby. The message sent from the man is called "g". All the cells of the placenta that line up around the egg have the genes that will be needed to construct the placenta and the message sent is also "g". The mom and dad are now in a partnership together building the placenta. The dad's "g" should be different from the mom's "g". The mom is responsible for making antibodies to dad's "g". This will provide a camoflage for the baby making it a sort of "wolf in sheep's clothing". The "g" of the husband acts liks a fertilizer, a growth molecule telling the placenta to grow and divide. When a couple is similar (as we are) there are too few antibodies to "cloak" the fetus. The placenta doesn't grow and divide like it should, beta tests don't double, ultrasounds may be "up and down" , the sac may disappear and the pregnancy is pretty much doomed. There is hope for this problem. Dr. Beer extracts the WBC from the husband (or a donor if the couple is too similar). The lab takes the WBCs and feeds them wheatgerm . After a couple of hours of breakfast the cells grow and divide. Dr. Beer theorizes at this point the "g" comes out of hiding. A concentrated serum is made (10,000 times stronger than what would be found in the placenta) and it is injected under the skin of the forearm (of the wife) much like a skin test for allergies. After two lymphocyte immuniztions (two sets of injections) the couple ought to be capable of producing the blocking antibodies necessary to take the pregnancy to term. Antiphospholipid Antibodies There are consequences for every action. Pregnancy is no different. Each time a pregnancy doesn't make it inside your body, there are conseguences. This includes even the act of fertilizing an egg. A 20% chance exists with each pregnancy and/or pregnancy loss that one problem make create another. In all probability, this is why we now have the antiphospholipid antibody problem. The phospholipids are a sort of glue necessary in every pregnancy. They look like little snowfalkes (of fat) which have a sticky end to hold the cells together. They fuse into other cells and act like a membrane . Think of them like a swimming pool filter. The phospholipids filter the nourishment from your blood and than in turn filter the baby's waste back through the placenta which feeds the baby and produces the BHCG throughout pregnancy. Phosphlioids necessary in pregnancy are: cardiolipin, ethanolamine, phosphatidic acid, glycerol and serine . In our particular case I have developed an immunity to ethanolamine (this is the "glue" which also sticks the sperm to the egg). Just like being immune to chicken pox and measles (I no longer get them) I now am immune ethanolamine so I no longer get pregnant. Ethanolamine and serine are also the "glues" which are necessary to build the placenta, so even if I were to get pregnant I still wouldn't be capable of building the placenta. Couples with this problem are good candidates for multiple failures at IVF / GIFT / ZIFT cycles. Once you have developed an immunity to one of the phospholipids there will be an attack on the baby even in a donor cycle! This problem is 97% efficient in the end to a pregnancy. However the key which locks this glue in place is your own body's natural heparin. Most people think of heparin as a blood thinner but in the case of combating the phospholipids, heparin acts in a way to lock the glue in place and keep the organs attached. The heparin must be taken preconception because the cells are already functioning as they are lining up around the egg. If there is a pregnancy 86% of the woman will become mothers. If they wait until after a postive pregnancy test 75% will lose their babies again. After the immunizations, treatment with heparin and baby asprin preconception 30% of Dr. Beer's patients have been successful without the use of ART. Natural Killer Cells and "Unexplained Infertility" It seems like years since we sat in Dr. Beer's office on a very cold, snowy Chicago morning in December. The consultation lasted almost two hours and Dr. Beer saved the "best" until last. The problem with my natural killer cells was the "icing on the cake" and probably the most difficult thing for me (us) to deal with. Everyone has (circulating) in their body something called natural killer cells. They secrete a substance called TNF (tumor necrosis factor) and lately the "powers that be" have been looking at the body's own immune system (these NK cells) as a way to fight cancer. The overactivity of these cells producing their TNF is deadly to a pregnancy. Unfortunately for us, I have an overactive immune system. Remember the DR /DQ numbers? I inherited a "4" from my father which puts me on the "Olympic Team of Immune Responses". Unless we can get this problem under control ther may be no way to complete a pregnancy. Treatment involves infusions of IVIG (intravenous immunoglobulin). The drug is called Gammamune and it is administered through an IV over a period of three days each month (preconception). Dr. Beer arranges to have this given through a home health care agency. the latest studies concerning this treatment are more than encouraging. Woman who have unexplained infertility are able to conceive with this treatment. Preliminary studies in recent clinical trials are showing as high as 80% are able to conceive with the use of IVIG. Light at the End of the Tunnel Our consultation with Dr. Alan Beer although hard, was a breath of fresh air. Dr. Beer with his impecable credentials and extensive knowledge of immunology exudes compassion for his patients . For many of us this is our last stop. Dr. Beer did both his residency and Genetics and a fellowship in Obstetrics and Gynocology at the University of Pennsylvania. He is a board certified OB/GYN who is also a joint Professor in the Department of Obstetrics and Gynocology and Microbiology and Immunology at the Chicago Medical School. Dr. Beer has been researching the issues associated with the question of why a mother does not reject the newly formed child in utero since 1970. I hope David and I will have a "Beer Baby" but whatever happens I will forever be grateful to Dr. Alan Beer and his dedicated staff for turning on that light at the end of the tunnel. For there truely is hope now that didn't exsist before. Addendum: Dr. Beer started treating us in November of 1993. We went back to IUI and then again to IVF. We were again successful on our FET (frozen embryo transfer) but this time the pregnancy is well underway. At this writing I am almost 26 weeks pregnant. We are due August 13, 1995. Our little "Beer Baby" is indeed on the way and that light at the end of the tunnel is very bright indeed now! Nancy P. Hemenway inciid@mnsinc.com --------------------------------------------------------------------------- It has been my experience that the miscarriage process has not been adequately covered by books or by doctors, especially, the emotional distress afterwards. Besides the understandable grieving process, I think that there is also a hormonal aspect that has caused me to experience "PMS times 10" for a month after each miscarriage. I had never had a PMS problem before I had the miscarriages, so I was not prepared for the emotional rollercoaster that followed. While some of it was natural mourning, and therefore a process that is necessary, even spiritually beneficial, to undergo, some of it was simply distressing and non-productive. I am starting to research literature on reducing PMS symptoms to see if it would also reduce the post-miscarrage syndrome. While I have not found much on herbal or vitamin recommendations for post miscarriage there are several for the traditional PMS. The whole B complex - especially B-6 has been shown to be useful for alleviating symptoms. Folic acid is also recommended. Supposedly, one of the reasons for the chocolate cravings that occur with PMS is a need for magnesium, which should be taken with calcium. I don't even like chocolate that much but I found myself wolfing down candy bars after each miscarriage. Herbal treatments include: St. John's Wort for depression, Valerian for anxiety and Dong Quai (there are numerous spellings) for disorientation. From the readings, I gather that Valerian should only be taken before bedtime, but the other two can be taken during the day. In fact, St.John's Wort not only has an immediate soothing effect, but supposedly has some enzyme-like positive effects that can only be felt after a few months of usage. Please research these before taking there are some medications that can't be taken with St. John's Wort, like asthma medicine. I took it during my pregnancy, along with Skullcap, to help sleep. There is a book that mentions these herbs called "Relief from PMS" by Pamela Patrick Novotory, published by Dell. I hope this helps. Deborah Pastor DAnnPastor@aol.com --------------------------------------------------------------------------- Bleeding in Pregnancy --------------------------------------------------------------------------- The question came up about bleeding during pregnancy and whether or not that indicates miscarriage. The summary of what I have to say is that I have been told that more than half of the women who bleed during pregnancy go on to deliver a full-term child, but pay attention and don't take it lightly if you find yourself bleeding. When I miscarried, I spotted for three days, lost the baby, and then continued to bleed for another week. I read like mad before I lost the baby, so I found all sorts of information. The three best books I had were "The Well Pregnancy Book," "A midwifes Guide to Pregnancy and Childbirth," and "Preventing Miscarriage: the Good News." I also talked to about 5 doctors in the course of being given 2 ultrasounds and some phone advice in the face of various changes. Things I learned (this is graphic): All vaginal bleeding *OF*ANY*KIND* should immediately be reported to your doctor. Don't wait until lunch, don't wait until morning, don't wait to make the drive: call and report what you can to whoever is in a position to advise you. Heavy bleeding is more likely to indicate miscarriage than spotting, but even women who bleed heavily do carry to term. One book said some women shed the uterine lining that is not near the embryo's implantation site. Bleeding accompanied by cramping or any kind of abdominal pain is more likely to indicate miscarriage. It is also an indicator for an ectopic pregnancy--especially if the pain is more on one side than the other. (Ectopic pregnancies will lose you a fallopian tube if you don't catch them *very* early.) Don't panic if you do have cramps, because digestive distress and stretching of uterine ligaments can cause abdominal pain too. Bright red blood is much more likely to indicate miscarriage than dark brown blood. Anything gray or pink is a very, very bad sign, since it usually indicates embryonic tissue or placenta. In my case, the fetal sack itself was unmistakable and left me no room for doubt (or hope). Bleeding that continues for three days or more is more likely to indicate miscarriage than some spotting that stops. Bleeding that occurs when you would have had your period is much less worrisome than bleeding that occurs during what would have been mid-cycle. Implantation bleeding is *very*common*, and it occurs around when your first period would have been. Many women will have bleeding at their normal menstrual points for up to three months. If you have a fever, faintness, or nausea markedly worse than it has been until you started bleeding (especially if it is accompanied by worsening abdominal pain), you may have an ectopic pregnancy that needs emergency treatment: don't wait to make that call--you need to receive further instructions based on your case. Two of my books told me that women who bleed and can get an ultrasound should be totally reassured once they see a strong regular fetal heartbeat. One book told me that 90% of the women who are bleeding but have a fetal heartbeat shown with ultrasound will carry to term. You have to be careful though, because those statistics are for abdominal probe ultrasounds, and apparently seeing a heartbeat using the trans-vaginal probe is not so reassuring. (I only found that last out because I lost my baby after seeing a strong heartbeat on the ultrasound monitor.) So I guess the amended rule is that if you are far enough along to see the heartbeat with an abdominal probe (and you see the heartbeat), stop worrying. The last, and most depressing thing I have to say is that if you do start losing anything gray or pink (or anything solid), you need to save it and give it to your doctor. What you lost can tell them if you have miscarried, if you might need a D&C to make sure no tissue is left behind, and (in very rare cases) clues to the cause of the miscarriage. Mostly, you will never know what caused it, but if you are like me, you have a tremendous need to try to find out how this happened. In my case, the fetal sack was a good clue because it was much too small for my stage of pregnancy. Even though I had a baby with a beating heart, something was wrong. Two doctors suggested that even though the cardiovascular system of my little one was showing signs of working well, the baby was not getting enough in the way of nutrients. They suggested that it might be an implantation problem. This is all conjecture, but even having a plausible scenario helped me. I needed an explanation of how I managed to violate the maxim about no longer worrying about the bleeding once you see the heartbeat. Tracy Larrabee larrabee@cse.ucsc.edu --------------------------------------------------------------------------- Tracy, thank you for a very informative article on bleeding in pregnancy, however, I would like to point out one thing about the statistic above. The fact that over 50% of women who bleed during pregnancy go on to deliver a full-term child doesn't mean (and you didn't imply this, either, but I'm sure someone will read this this way) that if you do bleed you have a 50% chance of miscarriage. I am currently 24 weeks pregnant with my second child, and with both pregnancies I bled and had cramps at the beginning. The first one was worse and I spent three months thinking a miscarriage was imminent. I had intermittent, heavy, bright red bleeding accompanied by sometimes severe cramps. Fortunately, everything turned out fine, and I delivered a big healthy baby boy. If I had read this article during those first three months, however, I would have freaked out. Anyway, maybe you could add a note to your FAQ article pointing out that every pregnancy is different and that although bleeding is a signal that you should get checked by the doctor, it doesn't necessarily mean miscarriage is likely, or even indicate a 50% chance of miscarriage for any particular woman. BTW, in my case it turned out that I wasn't bleeding from the uterus after all, but that I have what they call a "friable cervix," which means that it has a lot of blood vessels in it that bleed easily. So despite all my worrying, I probably wasn't in any more danger of miscarriage than in any non-bleeding first-trimester pregnancy. Anyway, this is just my experience. Thanks, Judy Drake judy@pendragon.cna.tek.com --------------------------------------------------------------------------- I first want to preface this by telling you that I had a perfectly healthy baby boy - 8 lbs 11 oz, 23 1/2 " long! At 7 weeks, before my first Dr.'s visit, I had spotting of the dark brown kind. This was over the weekend, so the Dr. told me to schedule an ultrasound on monday morning to see if everything looked normal. The baby's heartbeat and growth all looked perfectly normal, so he said I could continue all regular exercise. Don't take up a new sport, but he specifically said my horseback riding was perfectly fine, just no jumping. At 10 weeks, I tried out a friend's horse for only 10-15 minutes, but when I got off the horse, I had floods of blood running down my legs. I was hysterical, and my friend rushed me to the emergency room. I assumed I had miscarried because I couldn't believe there could be so much blood and the baby could live. They called in an ultrasound tech, and the ultrasound showed a healthy baby with a normal heartbeat. 10 weeks is before the placenta is completely formed, but they guessed that I had a low lying placenta and had torn off a piece of it. I was given strict orders for bedrest for a week, but before the week was out, I had hemorrhaged again. This heavy bleeding continued off and on until 14 weeks even with bedrest. For no apparent reason, I would stand up and the floods would just start. It went away on its own. Later sonograms confirmed that I had a small piece of placenta that had torn off. They explained that the danger passed because as I got bigger, the placenta moved up with my expanding uterus. At the time, all they could tell me as a diagnosis was "threatening to miscarry". Any unexplained vaginal bleeding during a pregnancy gets this label. I carried my pregnancy to term, but the next time I am pregnant, I will not ride a horse regardless of what the Dr. says! Michelle Schott MBS4@psuvm.psu.edu --------------------------------------------------------------------------- I think when you start to bleed in the first trimester, this is not good, but not always bad. My doctor had me check the color (bright red is bad), as well as the amount of bleeding. I was in my 8th week when I started to spot. My doctor told me that if bed rest doesnt slow down my bleeding they would have me take a quanitative pregnancy test. The test showed that my HCG level was down very low and this is why I was bleeding and if it continued to drop that meant that I was miscarrying. I miscarried after 1 1/2 days of bed rest. I got pregnant 4 months later and gave birth to a healthy baby boy in May. I feel that my first pregnancy that ended in miscarraige was not meant to be. It took some time to get over, but I did. I do think about it, I did all through my second pregnancy, and I thank God for giving me Zachary. I think its important that women who are pregnant be aware of what may or may not happen. I went into my first pregnancy thinking that every thing would be perfect, I had no worries, then boom it happened. With my second pregnancy I knew what could happen, so I took it one step at a time. I didnt tell anyone until I was well into my third month. Then when I started to show and I heard the baby's heartbeat I just sat back and enjoyed being pregnant. --------------------------------------------------------------------------- I had spotting with both my pregnancies (one ended with a lovely girl, the other was a miscarriage at around 6 weeks) and the only difference I could see was that the spotting was a little heavier for the one that miscarried. So spotting may not be a definite indicator of an impending miscarriage. I also disagree with the doctor who said to keep on with normal activities even with the spotting. My doctor recommended taking it easy the first trimester (the spotting ended after that) because that's the time when you are most likely to miscarry and a little extra care (no heavy lifting, no athletic exercise beyond walking, etc.) would go a long way to prevent any sad endings. Joanne Petersen joanne@hpcc01.corp.hp.com ---------------------------------------------------------------------------