How My DES Exposure Has Affected Me So Far, Part 3: High-Risk Pregnancy

In yesterday’s post “How My DES Exposure Has Affected Me So Far, Part 2,” I outlined how my T-shaped uterus, a direct effect my in utero exposure to the synthetic estrogen drug diethylstilbestrol (DES), affected my fertility.  I had to suffer through seven intrauterine inseminations (IUIs), multiple pregnancies lost due to implantation problems, a miscarriage, two rounds of Clomid®, and three cycles of Lupron® (to stall my ovulation), Gonal-f® (to stimulate my ovaries and make my tiny uterus “less rigid”), estrogen patches and oral progesterone before I had a successful pregnancy.  Yet, that pregnancy was high-risk, with complications from its 27th week on.  Here, I’ll walk through those complications.

As I said in my last post, DES Daughters with T-shaped uteri are at an increased risk for ectopic pregnancies, and my son barely made it into mine, implanting at the farthest possible left point of my T—not an area conducive to embryo growth.  However, during the weekly ultrasounds I had from my sixth to tenth weeks of pregnancy, he grew toward the open space to the right, smart embryo that he was, considering that there was no open space above, below or to the left.  Yet, every week my reproductive endocrinologist would gravely state that I “could miscarry at any time.”

After my son’s heartbeat was detected during the 10-week ultrasound, my doctor proclaimed my son a “miracle,” then released me into the care of a downtown Chicago hospital’s Maternal-Fetal Medicine division, the high-risk obstetrics group. 

All DES Daughters with T-shaped uteri have high-risk pregnancies because of the tendency of their cervixes to thin, resulting in early miscarriage, late miscarriage and pre-term delivery.  The term for our problem is “incompetent cervix,” for our cervixes, the bottom part of our undeveloped, deformed, too-small uteri, are often not strong enough— not “competent enough”—to hold an ever-growing baby inside the womb.

I had an additional risk for incompetent cervix in that I had had part of my cervix removed because of precancerous cells—the result of a high-risk stain of the cervical-cancer-causing Human Papilloma Virus (HPV).

In normal pregnancies, women have prenatal appointments once a month, until they get closer to their due dates.  I spent the majority of my pregnancy going in for check-ups once a week.  In normal pregnancies, women have one ultrasound—at around the 20-week mark.  I was so used to having weekly ultrasounds that, when I once went three weeks between them, therefore didn’t have that every-week reassurance that my baby was OK, I thought I was going to have a breakdown. 

Check-up after check-up, all was well.  One doctor thought I’d gained too much weight in my first trimester—18 pounds—but, the following week, a different, more seasoned doctor in the practice reassured me, explaining that he’d just delivered a baby carried successfully by a 400-plus-pound woman, so he wasn’t worried about my weight.

But, during my 27th week of pregnancy, during my exam, one of the doctors found that I was already dilated to 1 cm, with 13 weeks of pregnancy to go.  She put me in a wheelchair, called over to the Labor and Delivery wing of the hospital to announce my forthcoming arrival, and had a nurse push me over to check me in.  The nurse, seeing the St. Gerard charm I wore on a necklace, starting praying over me. 

I knew the odds of my 2-pound son not living if he were born this early in my pregnancy.  If he did survive, I knew the litany of permanent physical and developmental problems he could face.  So, being rushed over to the hospital—not even allowed to go home to pick up clothes, toiletries and my laptop for my stay—frightened me considerably.  But the nurse praying over me, praying for my baby, just about did me in.

I was checked into the hospital for 48 hours, during which I was given steroid injections to advance the development of my son’s heart, his lungs, his stomach and the blood vessels in his brain, so he would have a fighting chance if he did come prematurely.  I was in a teaching hospital, so my cervix was examined by doctor upon doctor to see if I had dilated further, which I hadn’t, and to give the residents the opportunity to learn from my body.

I got to the point in which I thought the staff should make an announcement, such as, “If there is anyone in this hospital who has not felt Mary Kaye Kennedy’s cervix, this is your last chance, for she will be released by 3 p.m.”

Because I wasn’t having contractions, I hadn’t dilated further, I wasn’t bleeding, I wasn’t leaking amniotic fluid, and my son’s heartbeat was strong, I was released two days later, but was put on bed rest.  The doctor on rounds told me I’d need to stop working for the remainder of my pregnancy, but, when I explained that I worked from home, he said that was fine.  However, I was not permitted to lift more than five pounds, to travel, to shop, to do laundry, to cook, to clean.  I was supposed to “restrict my activity as much as possible,” but I was allowed limited use of stairs, limited driving, and one shower daily. 

As someone who hates winter and worked from home, I had previously gone multiple winter days in a row without leaving my condo.  But, it was psychologically different when being condo-bound was not my choice.  I felt trapped.  I felt isolated.  I hated that my baby could arrive at any time, while I was stuck at home, unable to prepare.  I sat up in my bed, with my laptop on my lap and worked and e-mailed my friends about my pregnancy status.  I ordered my food and toiletries and baby items from Peapod, and Babies R Us, so a delivery person, not me, had to suffer the three flights of stairs to my condo.  My boyfriend—now my husband—stayed with me most nights and every other weekend, when he didn’t have a business dinner or weekend visitation with his two sons.

Each week, I had to break my restricted status to go to my prenatal appointment, and each week I was still dilated just 1 cm, and my baby was staying in.  So, I was told I no longer had to be on strict bed rest, but just “restricted,” meaning I still had to take it easy, but didn’t have to be in bed all day long.

But, at 31 weeks of pregnancy, I was not only dilated to 3 cm, but also completely effaced and having contractions, which I wasn’t aware of.  I had been feeling throbbing pain, but it wasn’t labor as described in all of my pregnancy books.  I was once again wheeled over to Labor and Delivery, where I was monitored for five hours.  The monitors picked up contractions, but, because they were irregular, I was released, but this time put on strict bed rest—no walking unless to the bathroom and to take one shower a day.

The resident said, based on her exam, I’d likely deliver in the next week, two at the most.  However, when I was examined by one of my own doctors, for there were seven in my high-risk practice, I was told that, considering that it took 4 ½ weeks for me to dilate another 2 cm, I could last a while longer, but would definitely deliver early.  She explained that three weeks into the future, at 34 weeks, the practice wouldn’t even try to stop labor, “because the risk of the medications I’d need to take to stop contractions is greater than the risk of the baby being born early.”

After this second hospitalization, I was so worried that I had trouble sleeping and had a panic attack, even though at 32 weeks, my baby would have a 95% chance of survival.  On December 15, 2004, I wrote the following in an e-mail to a friend, which outlines my concerns about my son being born prematurely, along with the requirements of my job, desperately needed since I was going to be a single mother:

“I will be 32 weeks tomorrow, which they had initially set as the goal, but it feels too early to me.  The further along I get, the further along I want to be, so he is as healthy as possible, so that I can hold him and breastfeed him right away, and so that I can bring him home.  The other factor is that work is completely overwhelming right now, and, until some things get accomplished (which are primarily out of my hands), I’m not going to be able to just take off for maternity leave, meaning I’ll be torn between going to the hospital however many times a day to visit him, drop off breast milk, etc. and working, which could send me over the edge.  I had a panic attack yesterday after a particularly frustrating chat with one of my clients, but knew it was because I was overtired, so I slept for hours yesterday afternoon, and now I’m back to normal.  I just want to be able to do whatever I need to do for the baby, spend as much time as I need to with him, without worrying about work.  And, if he comes any time soon, that will not be possible.  But, I’ll get through it…”

When I miraculously made it to 34 weeks, I was taken off of bed rest and told just to stay off my feet as much as possible.  I was experiencing extreme pelvic pain, so one of my doctors told me that my son was putting too much pressure on my pelvis, so to buy a maternity belt to lift him up.  I did, and it helped a little, but it still hurt to walk, and I literally couldn’t get up from my bed or the couch sometimes, which was humbling.

During my January 4 appointment, at which I was 35 weeks’ pregnant, the nurse told me that, when they were going over my chart that morning, one of the doctors asked when I’d delivered, assuming that I had to have had my baby.  She said that no one in the office could believe I was still pregnant.

The doctor who examined me said that my cervix was almost completely effaced at 70%, although my dilation was still 3 cm, and “effacement is more an indicator of when I’ll deliver.”  He predicted that I’d deliver in the next week or two and explained that the only difference between delivering between 35 weeks and “term,” defined as 37 to 40 weeks, was a possible stay for the baby in neonatal intensive care unit, likely for something minor.  He said the baby had a 98-99% percent survival rate—and that there is no 100%.  It was at this point that I let myself feel confident, after seven months of worry.

I lasted another five weeks, giving birth on my son’s due date.  But, my super-sized baby didn’t want to leave me.  I was in labor for 17 ½ hours and given Pitocin® to advance my dilation, shocking my doctors once again, before my son was born.  And, my son weighed 9 pounds, 7 ounces.  My underdeveloped, one-third normal size, T-shaped uterus stretched to accommodate a full-term almost-10-pound baby.

So, after enduring DES-induced infertility and a DES-induced high-risk pregnancy, I was able to celebrate a happy ending with a healthy, full-term son.  After all of that suffering, unnecessary suffering because of my DES exposure, I have a son. 

So much joy was taken from me, for I couldn’t feel safe from the day I learned I was pregnant until I was at the eight-month mark.  But, so much has been given to me also, because I am a positive person who tries to see the silver lining.  I appreciate my son so much because of my struggle to conceive and carry him. 

I am now in the midst of another high-risk pregnancy, one in which, because I am only five-weeks’ pregnant today, I will have another seven months of worry.  But, I have been blessed to have the opportunity to have another child (or two), and I will remember that each and every time my stress levels threaten to overwhelm me. 

So many DES Daughters have been unable to have children.  So, although my DES exposure has complicated my life, my fertility and my pregnancies, I have perspective:  Among DES Daughters, I am blessed.

For more information about DES exposure and its negative ramifications, click on my DES links on the right side of this Home Page.

  1. marciaellis
    November 14th, 2009 at 13:46
    Reply | Quote | #1

    Hi Mary Katherine! I was googling DES this morning and found this post and it totally hit home with me! I am also a DES daughter(as is my sister) and have known since I was a teenager. My mother made me go to what I thought was a 100 year old gynecologist to check me for clear cell carcinoma(negative, thank goodness). He informed me of my unusually shaped cervix and told me that he was surprised that I didn’t have vaginal warts because all teenagers these days had them….OMG!! I live in Cincinnati and am 43 with three beautiful children(boy 17, boy 14, girl 11). What struck a cord with me was the doctors telling you about your misshapen uterus. Apparently I have a freakish cervix from DES exposure…now, I don’t know what a cervix looks like nor do I ever want to know but every time a doctor looks at mine he says “Oh, you must be DES exposed”. What, is there a label on it?? My OB/GYN was a teacher of residents and every time I was in the hospital having one of my kids he would parade his current group of residents in and ask if I minded if they could take a look at my cervix since it was such a classic DES cervix. Like what was I going to say??? Anyway, just wanted to say that I enjoyed your posts and good luck with your pregnancy!!

    Marcia Ellis -

  2. mk
    November 17th, 2009 at 09:51
    Reply | Quote | #2

    Hi, Marcia:

    Thanks for writing. Isn’t it wonderful to be an example of rarely-seen abnormalities? I’m so happy that you have three children, b/c many DES Daughters are unable to conceive and carry them.

    I lived in Cincinnati from 1985, when I was 16, and my family moved to Montgomery, where I attended Sycamore High for my final 1 1/2 years of high school. After high school, I went to Miami, then back to Cincinnati, where I worked for a downtown ad agency, then the Cincinnati Museum Center, before moving away when I was 26. I LOVE Cincinnati, and with my parents, two brothers and their families, and lots of friends there, I visit as often as I can.


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