I am writing all of this down as I have a strong belief that our learnt information, experience and sadness can be wasted unless we share it. Personally I don’t want the pain I have endured to go to waste.
After 5 losses I knew it wasn’t “just one of those things”. My 3 older babies were not miscarried they were termed as “mid trimester intrauterine fetal deaths”. So there was no bleeding just a very still baby on ultrasound.
I had really felt like something was wrong. I was "jollied" out of feeling that way by my careprovider and those around me. I didn’t listen to the voice inside me (the one we all have) that seemed to keep coming back to needing some medication. I had read extensively about the use of prednisone, heparin and asprin in recurrent fetal loss. Still I deferred to the voices of these other people.
Something I have learnt is your voice needs to be heard. Really hear it and no matter how insane others around you think you are go with it...
Another thing I know is that you need to research. You need to know what is going on in your body. You need to try and understand the tests and what they mean. I know this is hard for people who do not have a medical background but this is your body and your baby and you need to have knowledge. I think, for me this may be part of the journey and uncovering information and knowledge and understanding it can be so very empowering.
I have learnt some things that I would like to share in the hope that another woman will hear and she may learn something that may help her and her own personal situation. Or maybe someone without this sadness will read this and learn just something that *****s her ears and may help another...
Recurrent miscarriage or recurrent fetal death is termed only as such after you have had 3 consecutive losses before 12 weeks or 2 after 12 weeks. Many care providers will not investigate until you have fit this criteria.
However, you can demand to have tests and if your doctor won’t test you can choose to find a doctor that will. Try not to be afraid of asking for what you want or believe you need. Is that embarassment going to matter in a years time – likely no but what you learn may help you...
If you have had just one late loss and that baby is found to be chromosomally normal then I urge you to insist on blood work. Babies don’t just die for no reason. No matter what the old lady next door or great Aunt Bertha tells you. Maybe a one off later loss is due to a cardiac or organ condition – that is possible and probable. However have tests to discount any other problem before you believe that the death of your baby was “just one of those things”.
These will make it more likely that your blood will abnormally clot in pregnancy. Pregnancy is a hypercoagulative state. Meaning it clots more than usual. If you have an inherent disposition for clotting due to one of the below pregnancy will make things worse. Many women do not know they have a clotting disorder until they suffer from the loss of a baby.
Thrombophillia’s are many and varied but the most common ones are these:
antithrombin III deficiency,
resistance to activated protein C (factor V Leiden),
protein C and protein S deficiencies,
prothrombin gene mutation,
MTHFR gene mutation
Factor V Leiden
FVL (Factor V Leiden) increases the risk of venous thrombosis (clots to a blood vessel) 3-8 fold for heterozygous (one damaged gene inherited) and substantially more, 30-140 fold, for homozygous (two damaged genes inherited) individuals.
I believe that around 5% of the caucasion population have this disorder. Many practitoners believe that being heterozygous for factor v leiden does not make you at higher risk for fetal loss.
After all I have learnt I would debate this with my care provider and seek out more information.
Another cause for recurrent or late loss is antiphospholipid syndrome. Under normal circumstances, antibodies are proteins made by your immune system to fight substances recognised as foreign by your body Eg: bacteria and viruses. Sometimes the body's own cells are recognised as foreign.
Around 2 percent of the population have APS and the symptoms are commonly sore joints and tiredness – common symptoms for autoimmune disorders. However many people have no symptoms and it is only when recurrent miscarriage occurs or a late fetal death that tests are done.
In antiphospholipid syndrome the body recognises phospholipids (part of a cell's membrane) as foreign and produces antibodies against them. Antibodies to phospholipids can be found in the blood of some people with lupus, but they are also seen in people without any known illness. Lupus anticoagulant and anticardiolipin antibody (ACA) are the two known antiphospholipid antibodies that are associated with recurrent pregnancy loss.
To be diagnosed with Antiphosophlipid Syndrome you need to test positive for the lupus anticoagulant or to the anticardiolipin antibody on two separate occasions a couple of months apart. You also must have a history of thrombosis (a clot in one of your blood vessels),a history of thrombocytopenia or recurrent pregnancy loss.
It has yet to be proven but many researchers think the Antiphospholipid Antibody Syndrome may exist in a state of remission or exacerbation similar to other diseases such as lupus or rheumatoid arthritis. This means you could have periods of times when the antibodies are active and times when no antibodies can be found.
One of the routine tests for recurrent miscarriage or fetal death should be anticardiolipin antibodies.
Homocysteine is an amino acid, which is now considered a risk factor in several disease states. Some studies have looked at recurrent pregnancy loss in women with folic acid deficiency and elevated homocysteine levels.
Folate is a necessary nutrient for affective motabalisim. Years ago, it was found that drugs which blocked folic acid metabloism led to pregnancy loss. Therefore an association appears to exist between low folate and pregnancy loss. Homocysteine and folate metabolism are inter-related. The risk of recurrent pregnancy loss was found to be higher in patients with elevated homocysteine levels and low folate levels. It was suggested that folate supplementation may decrease the risk of miscarriage.
Many women are put on high dosage folate after a late pregnancy loss or recurrent miscarriage. This is why. Many women talk of concern that the folate dosage is so high 5mgs conversly many women take a 5oomcg daily doseage. Folate is water soluable and your body will excrete what it doesn't need.
Folic acid is crucial for proper brain function and plays an important role in mental and emotional health. Folic acid aids in the production of DNA and RNA, the body's genetic material, and is especially important during periods of high growth, such as pregnancy. Folic acid also works closely together with vitamin B12 to regulate the formation of red blood cells and to help iron function properly in the body.
Folic Acid works closely with vitamins B6 and B12 as well as other nutrients to control blood levels of the amino acid homocysteine.
Recent studies brings into question whether there is a connection between elevated homocysteine (and, therefore, folate deficiency) in the mother and Down's syndrome in the child. This is an interesting connection that is currently being studied further.
If you have recurrently miscarried having your homocysteine levels checked would be important. Homocysteine levels are not accurate unless you have been fasting for 8 hours (water is allowed!).
Many practitoners will put all women on high doseage folate who recurrently miscarry. However many do not also advise the inclusion of B6 and B12. I believe the recommended doseage of B6 is 100mgs and B12 50mcgs.
Interestingly folate rich foods and herbs have been age old treatments for women threatening to miscarry or who have a history of pregnancy loss...
Chromosome abnormalities are known to be the single most common cause of miscarrige. By far the majority of chromosomal abnromalities are trisomies. In the case of these types of chromosomal abnormalities parental chromosomes are usually normal. In these cases the risk of reoccurence is thought to be at around 1%.
In up to 7% of couples with at least 2 losses one partner carries a balanced chromosome arrangement. The most common is a translocation which simplified means that part of the chromosome has changed places and gone where it shouldn’t be. When this happens the chromosomes have difficulty pairing up and dividing. This means that the developing baby has an unbalanced amount of chromosomal material. These imbalances are usually lethal to the developing baby
It is quite possible that the couple will have healthy children. In fact a higher incidence of chromosome rearrangment has been found in couples who have experienced both recurrent miscarriage and viable pregnancy than in couples where no live children have been born.
When only one parent carries a chromosome rearrangement the chance of spontanious miscarriage is around 25 – 50 %
Karotyping should be carried out on both parents when there is recurrent miscarriage or late fetal loss. This is a simple blood test taken from both parents. This will rule out the above as a cause. Ths test will take about 6 weeks for a result to be made available.
This is a fairly controversial area and one that many doctors poo poo. However, intellectually it makes sense to me.
The immune system is composed of more than 30 types of white blood cells.
Lymphocytes, particularly B-cells (antibody producers), T-cells (helper and suppressor) and killer (NK) cells have been the focus of intense research interest to the discipline of reproductive immunology.
NK cells are responsible for protecting us from invasion by bacteria, viruses and foreign bodies, and rejecting organ transplants.
The fetus contains foreign genetic material coming from the father, but in normal circumstances it does not get rejected. However, in some women these NK cells may reject the fetus and cause a miscarriage either by being high in numbers or by abnormal hostile activity.
This problem, as most autoimmune disorders, can switch on and off, therefore some of the women may have one or more normal pregnancy outcomes as well as recurrent miscarriages.
There is a special class of NK cells (CD16-, CD56+) in the placenta that promotes fetus survival. Opposing is another group of NK cells (CD16+, CD56+), if these opposing cells are active they are toxic to the placenta and may cause a miscarriage.
The same cells secrete tumor necrosis factor (TNF) which can destroy the placenta.
Implantation of embryos into the mother's womb is a complex process involving several factors. Pregnancy may fail when these events are not well synchronized.
Therapy aimed at calming these immune activating factors should, theoretically at least, encourage fetal viability.
The NK cell is the most abundant immune cell infiltrating the womb implantation site. In a previous study, an elevated percentage of peripheral blood NK cells were associated with recurrent failed IVF-ET treatment cycles. Another study showed that increased peripheral blood NK cell toxicity was associated with an increased rate of recurrent failed implantation after IVF-ET treatment. More recent studies have confirmed elevated NK cell CD69 expression as being associated with recurrent miscarriage and infertility of unknown reason.
Something also to consider is that you will see from all of this information above that an autoimmune response is a common cause for recurrent miscarriage and fetal death. In fact more than half of all causes of recurrent miscarriage and fetal death are either immune or coagulative. Autoimmune disorders can lay dormant for years until they have a trigger. We don't necessarily know what those triggers are. Some suggested ones are environmental - poisons, insecticides, a particular ingredient in a cleaner... Who knows maybe it's none of these but we do know there has to be a trigger.
Sometimes pregnancy can trigger these responses on it's own. However that doesn't account for all of those women who have had successful pregnancies and then endure a fetal death or recurrent miscarriage.
You will see from the above that immune disorders often cause a coagulative response.
I urge every woman who has endured the pain of losing babies to sit quietly and write down everything that you can think of that could be pertinent. Rashes, sore joints, unexplained fatigue and headaches. Family history of arthritis. Anything! Talk to your familiy members.
I urge you to gather opinions. We get 3 quotes when we need to fix the car and this is so much more important. Go to 3 separate practitoners. Go armed with your pathology which you can have released to you from freedom of information.
Write your history down as clearly and as accurately as you possibly can. If you are not sure something is relevant write it down anyway. Take this with you or better still send it in advance of your appointment so the doctor has time to read it before your consultation.
If you have access to a reproductive immunologist seek out an appointment. Many of these guys do phone appointments for those of us that live outside Melbourne or Sydney.
Do not believe “it’s just one of those things” because maybe it isn’t.
Remember there is much that the medical profession doesn’t know. You and me and the woman next to you on the bus could all have a condition that is yet to be named.
In fact I am sure I have. I am sure within the next 10 years there will be a name for this thing that has taken my babies.
If there is no name for what is happening to you discuss treatment with your doctor and the ones that you will “interview”. A study recently published in the American Society for Reproductive Medicine has shown that 94% of the women in this study who had endured recurrent miscarriage (secondary or primary) had a successful outcome on anticoagulant therapy.
In excess of 80% of women who have endured late loss or recurrent miscarriage go on to have a live healthy baby when they are medicated as indicated by their condition.
Those are happy odds!