This article is from the Miscarriage FAQ, by Laura Brooks brook006@mc.duke.edu with numerous contributions by others.
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!
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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.
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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.
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