Septation: My Story and How Mullerian Anomalies Could be Affecting You

We started out like anyone else might have. I was 23, my fiancé was 21, and we’d decided to have a baby. When I got pregnant not much later we were thrilled, told both of our families and proceeded to see an Ob/Gyn for prenatal appointments.  Overall things were going well, sure the doctor wasn’t happy with my initial weight and there was a false positive on the triple test (due to having a due date that was a month ahead of where were actually were) but we were ready to have this baby and we thought that we would have it the same way everyone else did. We were wrong.

            The trouble was that the baby wasn’t turning and my due date was fast approaching. I’d been reading during most of my pregnancy, trying to consider all of the options and be as informed as I could be. Taking the birth class, listening to the doctor, we thought we were going to be ready. I never really thought that any of the big scary things that can happen would happen to me. Sure I’d read about them. The doctor, nurse and any number of television shows, articles and books, had even told me about them but I didn’t see it coming, it wasn’t in my birth plan.  I’d never expected that I’d be having a c-section and I didn’t take it well. Before I knew it, I was in the hospital, asked to stay overnight for monitoring before the surgery the following morning. I wept and shook all through that night, never quite calming completely though my fiancé and my family were with me. It was my first hospital stay.

            The following morning I went into surgery. I had a healthy baby boy and though I was in pain for the first week or so I felt better about having had the procedure. It wasn’t until the first post-natal appointment that I knew the whole story, and the circumstances had been a whole lot scarier than I’d imagined. I had never gone to a gynecologist before my pregnancy. The only irregularity I’d had in my period was a two-month span during which I had no cycle (I was 14 and not sexually active) and my fiancé had been my only sexual partner. I hadn’t thought it necessary. I’d made a serious mistake that could have meant miscarriage, stillbirth, hysterectomy or even death. In short, I’d dodged a bullet. My son and I were fine and I had my doctor’s skill and luck to thank for that.

            Nikki was stuck in the bottom first position, when he was drawn from my womb, the chord was wrapped around his neck three times. He’d been trapped there by what the doctor later told me was a septation and in his effort to turn he’d wrapped the cord around his throat.

            What is septation? It’s a malformation of the uterus that occurs when a female baby develops in her mother’s womb. The uterus starts as two separate tubes like lines that grow together and in a healthy womb form a pear shape. In a woman with septation this formation doesn’t occur, instead it forms a heart shape, leaving a dangling part of the womb that has less blood supply for the baby to implant on and may completely separate the womb into two separate sections (this is bicornuate). The severity of the separation affects the outcome of a pregnancy if it occurs at all. Factors like where the egg implants on the uterine wall, blood-supply, placenta acreta (when a portion of the placenta adheres or grows into the wall of the womb. leaving the mother at risk for bleeding and/or infection), first trimester miscarriage and fetal death can result from this mutation in the uterus' shape. The chances of having this condition range from .01-.05 % by some estimates but these aren't the best statistics as the sources are often women reporting infertility and not all of the women facing septation and the other mullerian anomalies like it.

            What are mulllerian anomalies? Mullerian( this comes from the title for the embryo’s ducts which grow together to form the uterus) anomalies are aberations in the female reproductive system. This means that the women with these conditions have mutations in their reproductive organs, it’s a developmental error that occurs in the womb. Examples of other anomalies would be: Women who have an underdeveloped or small uterus (Agenesis & hypoplasia), a uterus which has only one mullerian duct formed (Unicornuate uterus), and Uterus Didelphys which causes the two ducts to form separately and may leave the woman with two uteri, vaginas, or cervixes. All of these aberations can make it difficult to concieve, much less give birth. There is no definite cause for these anomalies but they have been attributed to being hereditary or caused by some sort of affect to its development by outside sources like DES (Diethylstilbestrol, an artificial hormone given during the 1960s and 70s.) as much as random mutation.

            Dr. Delong told me what he knew about it and asked me to research it before we pursued having any other children. The trouble was at the time (this was 2005) there really wasn't much information out there. From medical journals and books that only noted it in passing to an internet that had only the most basic of information on the subject. My doctor had been a skilled and respected Physician at Akron General Hospital for several years before moving to a practice in my much smaller community of Holmes County. I don't know that the outcome would have been the same if he hadn't been the one to handle my pregnancy.

            I came out of my first pregnancy with a beautiful, healthy little boy, but I wasn't so lucky with the second. It had been about two years since Nikolai was born and things had gotten a little hectic. I was two months in before I admitted to myself that I might be pregnant and sought out a doctor who could handle my high risk case (my original doctor had gone on to Florida). The new doctor sent me on to Akron's Maternal Fetal Medicine group.

             I came in for an ultrasound after turning up abnormal results on a quad-screen they'd given me a week before. I was asked to come in to talk to the genetic counseling section and scheduled to have an ultrasound after I was finished there. It was Valentine's Day. When they did the ultrasound there was no fetal heartbeat, the baby we would later come to call Aurora (we never learned its sex). I carried my baby another week after that as we discussed how to extract the baby with the least risk to my health (hysterectomy was a fear due to the placenta acreta that was also part of my first pregnancy. This is also found to be more common in women with mullerian anomalies). We eventually opted for a DNE.

            This isn't to say there aren't options that can help change these risks for those of us who are eligible for corrective surgery, but finding the doctors who can care for us, the insurance that will cover these conditions as well as the money to travel the distances necessary to get that care? We are women at risk and women with great loss, whether we ever have a pregnancy that results in a loss, a baby or never have children at all. We feel betrayed by our own bodies, insecure in our ability to create life, a gift that so many others take for granted. We are even insecure in our roles as women and lovers. Because the lack of support and understanding,  we question ourselves. We often feel separate, alone, and different. We need the support and comfort of our lovers, our friends, but more than anything we need to know and talk to women who share our experiences. To know ourselves we must be able to look at it from the outside and see it as an obstacle to overcome and make peace with rather than an unbearable flaw we must hide.

            Several doctors I have talked to since aren't familiar with the condition and its risks. I feel there are many women out there who have no idea that they have this, that it might be the reason they had a miscarriage, stillbirth or why they can't become pregnant at all. It's a very real threat that many women that have this anomaly are risking their lives and the lives of any children they conceive without knowing it. There was not enough information out there when I first tried to research my septation and though it's getting better, there could be so much more being done! The women who have septation and the women who have one of the many other mullerian anomalies need resources! We need to be able to understand ourselves and have others understand us, we need more and better medical care and most of all we need each other.

Resources:

Mullerian Anomalies

A blog dedicated to sharing information about Mullerian Anomalies and the stories of women who have them. An excellent resource for information and support!

http://mulleriananomalies.blogspot.com/

Surgical Management of Mullerian Duct Anomalies

http://www.emedicine.com/med/topic3521.htm

Uterine Septum - How a Septate Uterus Affects Miscarriage / Pregnancy Loss Risk

http://miscarriage.about.com/od/problemswiththeuterus/p/septum.htm

Uterus, Mullerian Duct Abnormalities

http://www.emedicine.com/radio/TOPIC738.HTM

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