Sunday, May 31, 2009

What to Expect When You're Expecting a Dead Baby

I had no idea what to expect when I found out my baby Jeremiah had died. So here's some basic useful information on what to expect when you've just found out your baby has died beyond the first trimester of pregnancy:

Having the Baby
When most people think about pregnancy loss, what comes to mind is early miscarriage, where nature often takes care of things or if that doesn't work, have a D & C.  I know how horrible early loss is.  I've been there.  With late loss there's a much bigger baby that has to get out somehow.  There are three unattractive options -

A) Waiting, B) D&E - dilation and extraction, or C)induce labor.

Generally, your choice depends on how big the baby is. If it measures about 16 weeks, your choice will probably be between A & B. If it's larger, you may be able to choose between A & C. If you're within a couple weeks of that guideline, you may be able to choose between the three.

A) Wait for labor to start on its own

Pros:
  • You don't have to have invasive medical procedures
  • You can be at home instead of in the maternity ward
Cons:
  • It's unlikely to happen in the short time you'll be allowed to wait; most doctors don't want you to wait more than a few days because of the risk that you'll get an infection
  • If you have the baby at home, it's harder to get all the testing you may want done if the cause of death isn't something obvious
  • You won't be able to function at all while you wait

B) Have the baby removed by D & EPros:
  • It's quick
  • Although you can't see the baby (unless you absolutely insist on it and have a strong stomach), you can have it cremated and choose what to do with the remains
Cons:
  • Possible side effects - hemmorhage, infection, uterine perforation, cervical laceration
  • You can't see the baby because it is removed in pieces
C) Induction of labor at the hospital
Pros:

  • You can see and hold your baby if you want to and you can choose what to do with the body
  • Having an intact baby and placenta can give you valuable clues about why the baby died
  • Hospitals often give memory boxes, memory books, or some other kinds of mementos to families that lose babies; you could also have photos taken and get the baby's footprints
Cons:
  • It can take a long time - plan on about 12 hours.
  • It can also be intensely painful, but since you don't have to worry about drugs harming the baby, you can choose whatever pain control works for you.
  • The drug used to induce labor, misaprostol, is not FDA approved for labor induction, although it is widely used for this purpose and quite effective.
  • Not only do you have to be hospitalized, but you have to be in the maternity ward with all the happy new mothers and their beautiful live babies.
  • Possible complication - retained products of conception, meaning everything that should come out doesn't. According to my doctor the risk of this is about 20% and the problem, if there is one, usually is that the placenta or pieces of it have to be removed either manually or by D & C.
Also, you should know that your hospital bill will be for "labor & delivery" with the charges being the same as if you'd delivered a full-term live infant, even though you won't receive anywhere near the time and care you would have gotten in that case.

What to Do with the Body

Again, three possible options:

1) If the baby is less than 20 weeks gestation (and thus a "late miscarriage" rather than a "stillbirth"), the hospital can handle disposition of the body if you choose. Some hospitals will cremate the baby together with other babies that have been lost (the hospital I went to does this every 3 months) and then the ashes are scattered at a local cemetery. If your hospital does this, it can be a nice option.

Other hospitals toss the bodies in with all the medical waste and incinerate them. I know it doesn't make any difference to the baby, but to me it's disrespectful to dispose of a baby the same way you would dispose of a cancerous tumor or a diseased gall bladder, if you can avoid it. That's why it's important to know your options.

2) If the baby was past 20 weeks gestation, it is a stillbirth and you are responsible for the body. Cremation can be a very practical option to consider.

Pros:
  • Removes many difficulties you'd face if you want to bury the baby at a later time or in another state.
  • It is easy to transport and bury the urn when and where you choose.
  • Or some mothers keep the urn and will have it buried with them when they die.
  • It's pretty inexpensive. In my case, a little over $300.
Cons: Some people, myself included, just don't like the idea.

3) Burial

Pros:
  • Many mortuaries provide tiny caskets free of charge to parents who lose babies.
  • Having a burial service and a place to go to grieve your child.
  • You can have the baby buried at the foot of a family member's grave, saving the expense of buying a burial plot.
Cons:
  • Compared to cremation, this option is more expensive and difficult to arrange.
  • Others (family, friends, coworkers, etc.) may think you're strange or even criticize you for wanting to bury your baby, especially if you want to bury him/her in an existing family grave.

Other Considerations

Choosing a name: I strongly recommend naming your baby. You will be talking about the baby in the future, if only with your spouse. It's much nicer if you don't have to refer to the baby as "it". This is especially true if you suffer multiple late losses: "it 1, it 2, and it 3?". It could get very confusing. Even if you weren't able to determine your baby's gender for certain, consider choosing a name that could work for a boy or a girl.

Medical testing: Testing to find the cause of the baby's death can cost thousands of dollars, especially if tests for genetic problems are done. Some tests can also be painful and invasive. And after all that, a cause can only be found in about half of all cases. But it's still a good idea to find out what you can. You'd just better hope you have good health insurance!

Certificate of Stillbirth: If you lose your baby beyond 20 weeks, many states (25 as of now) will issue you a certificate of stillbirth if you submit the paperwork and fee to get one. This at least acknowledges your baby as a human being, much to the consternation of pro-abortion groups. If your state does not offer this, consider getting involved in promoting legislation. Arizona even allows parents to take a state tax exemption for a stillborn child, which is very helpful in offsetting some of the potentially significant expenses of burial or cremation.

Dealing with other peoples' reactions: Generally, you can expect that any support you get from family or friends to be directly proportional to how far along you were when you lost the baby. The exception to this is if you've had multiple losses. In that case, the more pregnancies you lose, the harder it gets for you and the less support you get from anyone else. This was certainly true with my two late losses and I have it on good authority that it gets worse from there - by the third or fourth loss people can be downright hostile towards you for trying again.

So, be prepared for the following reactions but hope for better:
  1. Being patronized, humored, or even criticized for naming and/or burying your baby or for being sad/depressed about the loss
  2. Unless you lost your baby very far along AND the body was in good enough shape to hold a viewing, the loss is totally intangible to everyone else and thus, not real. People are very dismissive about it and wonder why you're so upset.
  3. People don't know what to say, so you may be avoided and ignored
  4. You will be expected to be back to normal after about 2 weeks. After that people expect you to just get over it and get impatient and upset with you if you aren't
  5. Friends who are pregnant or get pregnant in the future may avoid you and this is just hard for everyone.

Friday, May 15, 2009

Suspect #3: Something Else?

All I can look at here is my own case and what I learned from the woman in Texas who lost 4 babies to cord torsion. She said she's had no health problems herself, pelvic or otherwise, while I have a long history of gynecological problems. I don't think my pelvic problems caused by babies' deaths, but for the sake of being thorough, I will list the facts of the case:

  • I have endometriosis, discovered at surgery in 2008 (after my two losses). It does not seem to be widespread and only causes pain about one in four cycles.
  • I have a history of cysts. The first in 2001 was a benign serous cystadenoma (a huge one at 10") originating from the right broad ligament. This obviously required major surgery, but I was told it was unlikely to cause long-term problems. Because the fallopian tube was stretched around the cyst it was badly damaged, but was not removed during that surgery in hopes it would recover for reproductive purposes. However, it caused years of intermittent pain and was removed in 2008 along with the right ovary.
This cyst is the only thing in my medical history, other than my late pregnancy losses, that could be considered unusual or rare. Both endometriosis and functional cysts are very common. Endo may cause a higher risk of early pregnancy loss (presumably because of hormone problems), and both conditions may in some cases contribute to infertility, but neither is associated with late pregnancy loss.
  • I'd always been able to get pregnant easily until early 2008 (so this is after both losses) when I began getting frequent cysts on the left ovary, three of which have reached a size of 4 centimeters or greater. The first one was found during surgery. I can't get any straight answers from a doctor about why this is happening, but I suspect that the follicle generated each cycle just doesn't rupture and release the egg (LUFS - Luteinized Unruptured Follicle Syndrome), which would explain the infertility. When trying to conceive naturally, I use the ovulation predictor tests. They are never positive, but I do get a thermal shift. No LH surge = no ovulation = no pregnancy. One hypothesis put forward about LUFS is that it could be caused by severe chronic stress. Hmmm...
  • I have no other health issues besides the endometriosis and cysts, which ironically would both be shut down, at least temporarily, if I got pregnant and had a baby!
  • I don't smoke, do drugs, or drink alcohol and never have. I eat a healty diet, though I do have a weakness for chocolate, especially when I'm depressed which obviously has been A LOT the past few years. Nevertheless, I am neither overweight nor underweight. I exercise regularly - I find it helps with the depression. I'm 33 years old. Race - Caucasian.
  • Uterine problems (such as malformation, fibroids, and Asherman Syndrome) have been ruled out by thorough internal (HSG and sonohystogram) and external inspection (at surgery).

Thursday, May 14, 2009

Genetics: Looking for Clues in This and Other Cases

Certainly no genetic cause for fatal umbilical cord abnormalies has been found. That may be because there isn't one. Or it may be because so very little research has been done. The question is whether the genetic code responsible for the formation and development of the umbilical cord is itself flawed, or whether the genetic code is fine but the instructions can't be carried out properly because of other unknown factors.

The first two case studies we've looked at previously offer little information. The karyotypes (a test to identify and evaluate the size, shape, and number of chromosomes in a sample of cells) of the babies are normal, except one baby with a deletion in 3 out of 15 cells tested, which is not thought to be significant in this case.

The mother who lost 4 out of 8 babies to cord torsion said there is no family history of such problems and no abnormalities were discovered on karyotypes of the lost babies.

In my own case, the karyotypes on both babies came back normal, except for an inversion in one of Jeremiah's chromosomes:

This male karyotype carries a pericentric inversion of the heterochromatic region of one chromosome 9. This inversion written inv(9)(p12q13)) is an apparently normal chromosomal variation (polymorphism) found in approximately 2% of the general population. A large study carried out by Hsu et al. (1987) did not find any deleterious phenotypic or clinical effect of this chromosomal polymorphism, nor of any apparent association with fetal loss.

When my husband and I had karyotypes done on us, we found I have this same inversion. Our second lost baby, Miles, did not have it. Karyotyping is of very limited use in finding a possible genetic cause for such losses because it will only detect large changes in chromosome structure - large deletions, insertions, translocations, inversions, or duplications of thousands of base pairs. They will not detect single nucleotide changes, deletions, or insertions. The majority of genetic diseases are caused by single (or fewer than 10) base pair changes. It would be fascinating if DNA from babies such as ours could be analyzed with the technique written about here (read under "Completing the Picture").

In our case, we have wondered about a genetic link because of the circumstances of my husband's birth. He was born at term weighing only 5 lb. 0 oz. and had a small placenta and thin cord. Twenty-seven years later, our son David was born at term weighing only 5 lb. 0 oz. and with a small placenta and thin cord, exactly like dad. ALL of our four babies have had placenta/cord issues, with a 50% survival rate. When our daughter Tania was born, the doctor mentioned that her placenta was unusual because it had "2 sacs". She was not low-birthweight like her brother, but was still smaller than average at term, weighing in at 6 lb. 3 oz. Unfortunately, the placentas and cords from our two live births did not get sent to pathology. And of course our last two pregnancies were losses, Jeremiah from cord hypercoiling and Miles from cord stricture.

Since I've had a long history of gynecological problems (endo, cysts, etc.) it would be easy to conclude that our losses are my "fault", even though none of my problems are associated with late losses. I do wonder,though, if the problems my hubby had at birth were the result of a random and usually deadly genetic mutation affecting the cord/placenta - and now his random genetic mutation is passed on to our offspring as an inherited genetic mutation.

It should be noted that there have been no other cases of fetal loss or cord/placenta abnormality in either side of the family. My husband has four sibling and I have seven siblings who were all born without any issues similar to ours. Our siblings' children have all likewise been unaffected.

These days, of course, there are ways to get around a genetic flaw without jumping straight to adoption. In our case, if we knew the problem was genetic and we knew it came from my husband, I suppose we might go for a sperm donor because it's so much easier and cheaper than adoption, there are no strings attached, we would get to experience the pregnancy and birth, and the child would be 1/2 ours genetically.

But if we knew the genetic flaw was mine, then we'd be out of luck. For my part, I'm all for trying an egg donor even now with all the uncertainties of our case, but the price tag (estimated $30,000) puts this option way beyond our reach.

Another option for bypassing a genetic defect is embryo adoption, where "leftover" embryos from other couples' IVF treatment are given for "adoption" rather than thrown away. This option is cheaper and faster than adoption, the couple gets to experience pregnancy and birth, and avoid much of the legal and financial drama of a regular full-term adoption. The price tag (estimated $7000-8000) is a bargain if it works, compared to some other options such as using an egg donor, a surrogate, or doing an international adoption. But in my opinion it's still too much of a gamble unless you know you can bypass a genetic flaw in this way. Still, it doesn't hurt to be on the clinic's donor embryo list because it can take years before the option even becomes available. Who knows what our situation will be then?

So there are options, but even if mom & dad don't have religious, ethical, or moral qualms about bringing a 3rd, or even 4th party's DNA into the family, the resulting child may - and so might other siblings and the extended family. Of course, there's always the option of keeping the whole thing secret, but that also would bring up lots of issues.

The decision for us, at least for now, is that genetic tinkering will not be pursued. Although a good case can be made that our problem may in fact be genetic, we don't know that, so messing with our child's DNA would be a bizarre science experiment which, even if it went well and resulted in a live child, has the potential to put some very unique strains on our marriage and family.

Suspect #2: Genetics

Let's take a quick look (because there's hardly any information at all) at our #2 suspect for causing fatal umbilical cord abnormalities. Some researchers have suggested there may be a genetic basis for some types of cord abnormalities, and others have tried to disprove it.

The rarity of umbilical cord losses (it's hard to pin down a number on it - more on this in a later post) makes such research difficult and the rarity also means that almost no one in the medical community cares about this problem. There's no money in it. Rare conditions don't get much research or attention, and it's especially true of this problem because it kills the unborn, so the loss is intangible and easy to ignore for everyone but the parents of the dead baby.

Wednesday, May 13, 2009

Even More Bad News

The results are in from yet another ultrasound (it's been a very stressful week-long wait!) and despite being on the pill for a month now, my cyst has more than doubled in size, from 2 cm last month to 4.5 cm now, and has gotten quite painful. This probably means at least a few more months of waiting, which may not seem like a big deal, but my wait has been going on for three years now. I desperately want this whole issue to be resolved somehow, rather than dragging on and on with depressing news followed by still more depressing news. If the cyst grows much bigger, surgery may have to be considered . Again!! I'm still sore from the last one - and that was more than a year ago!

Since losing my babies the weeks have turned to months and the months to years, and almost all of it has been spent waiting - waiting for lab results, pathology reports, surgery, cysts, referral to an infertility clinic, cysts, and more cysts. Last year when I had an HSG test (where they inject radioactive dye through the cervix and then do an Xray to see if the fallopian tube(s) are still open) I was almost wishing my one remaining tube would be closed, because then hope could die once and for all instead of dying so painfully, inch by inch.

If this story does miraculously end happily, then all this hell will be worthwhile. But if not, I wish the senseless pain would end. All it does is compound the already substantial damage to my day-to-day functionality, faith, family, and friendships, and prevent any sort of "closure" or healing.

Thursday, May 7, 2009

Thrombophilia: Looking for clues in this and other cases

The frustrating problem with the two case studies I have is that there is so little evidence to either support or refute the thrombophilia hypothesis in these particular cases.

In the first case the woman lost 3 pregnancies in a row at 19, 16, and 15 weeks due to umbilical cord hypercoiling, stricture, and torsion. There is absolutely no information regarding thrombophilia testing or any other lab tests that were almost certainly performed after these losses. There's also no information on whether she tried any treatment such as heparin in any of the pregnancies. The report shows there was a 1.3 cm clot in the first placenta, but no clots found in the other two.

In the second case the woman lost 3 out of 4 pregnancies between 28 and 30 weeks all due to umbilical cord stricture. One of the 4 pregnancies resulted in a live birth at 25 weeks, presumably by C-section and presumably because of similar problems but it doesn't say. Also, like the first case there is no information on any lab test that were done or on whether any treatment such as heparin was tried in the later pregnancies. There is no mention of clotting in the placentas.

Thanks to Dr. Collins at the Pregnancy Institute in Louisiana, I was able to find out about a case where the woman lost 4 out of 9 pregnancies due to umbilical cord torsion at 19-20 weeks. Four of her pregnancies resulted in live births and the other was an early miscarriage. This amazing woman was kind enough to talk to me on the phone for an hour and a half telling me about her experiences. After having 2 normal pregnancies, she lost 2 babies at 19-20 weeks due to cord torsion. Then on the next pregnancy she tried using heparin (without strong evidence of clotting or thrombophilia on the first two losses). This pregnancy was also a loss. So after 3 late losses in a row, she tried again using heparin and got a live baby. The next pregnancy was another late loss despite using heparin, but the last pregnancy (also using heparin) resulted in another live birth.

This gives me hope that having a live baby is still possible even after repeated cord-related losses. However, it doesn't give much hope that heparin is the answer, since she experienced a loss rate of 50% (2 out of 4 pregnancies) without heparin, and a 50% loss rate (2 out of 4 pregnancies) with heparin.

In my own case, of course, I have more complete information on lab results, family and personal medical history, etc. as follows:
  • No solid evidence of thrombophilia from any of the many lab test that were done. More specific results on a couple of tests listed below.
All labs on mom normal, except moderate positive result on anticardiolipin antibody IgG, which we're told is not significant; after six weeks this was retested and the level was "inconclusive"

Additional testing on me showed I am heterozygous for MTHFT mutation C677T, which we're told is "not clinically significant
  • No family history of thrombophilia or clot related problems (heart attack, stroke, deep vein thrombosis, pulmonary embolism)
  • No personal history of clots, despite 2 full term pregnancies and two "half" pregnancies (pregnancy, especially the postpartum period, is associated with higher risk of clots), 2 surgeries (also causes a higher risk of clots), and several trans-oceanic flights (also associated with higher clotting risk). About a week after laparoscopic surgery last year, I had the opposite of excessive clotting and instead bled too much, resulting in this lovely hematoma.
  • The pathology report from my first loss does mention that fragments of blood clot were recieved with the placenta and cord, however I think this clot was probably formed at the time of delivery because the placenta did not come out in one piece. No mention of any clots found in either of the placentas in my case.
  • Although all lab tests for thrombophilia came back negative, I still wonder if my circulation is not what it should be, whether because of some clotting issue or something else. I do have some symptoms associated with clotting disorders, including fetal loss (obviously), IUGR (my son was 5 lb. 0 oz. at term), and a possible partial placental abruption during labor with my second child, but no actual evidence of clots.
I have no idea what any of this means. Anything? Nothing? I think the case for thrombophilia as the cause of umbilical cord pathology is weak at best, however I would not bet my child's life on it. If I have the chance at another pregnancy I would try the daily heparin shots - gladly.