**I apologize in advance if this offends or upsets you. Please don’t read it if so. I just needed to write it out.
“It might be something, but it might be nothing, we don’t really know yet.”
I was sitting in a tiny room with a obstetrician (presumably?) I’d never met, and a trailing medical student who didn’t say anything, but handed me a box of tissues, even though I wasn’t crying. They had brought me in there after the doctor had done a re-scan of the ultrasound. I thought she was rescanning to show the medical student how to do something. She wasn’t.
The ultrasound technician had said nothing. We’d done a whole, nearly hour long scan at 12 weeks 4 days of the baby. This is known as an NT scan or a genetics scan. Along with looking to see that everything is looking normal, they measure the nuchal translucency (NT) along the back of the baby’s neck. A wide reading is an indicator of Down’s Syndrome. They combine this scan data with some blood work I had done at 10 weeks, and give you a rough indication of your likelihood for Down’s, and a couple other trisomies.
“The good news,” the doctor said, “is that your risk for Trisomy 18 is extremely low, basically as low as you can get, and your risk for Down’s is also very, very low.”
“The bad news, however, is that your baby’s intestines are growing in a sac outside its stomach.”
This is called an omphalocele. They didn’t tell me how to spell it. It sounds like em-phal-lo-ceel. I saw it scribbled on some of the paperwork that the doctor had in her hands.
Omphalocele, also known as exomphalos, is a birth defect of the abdominal (belly) wall. The infant’s intestines, liver, or other organs stick outside of the belly through the belly button. The organs are covered in a thin, nearly transparent sac that hardly ever is open or broken.
The doctor and her silent student (whom I later came to associate with bad news) left and sent in a genetic counselor.
Now, mind you, I’m alone here. I went to this scan thinking it was a routine, no big deal thing. I also went to this scan with a full bladder, because they want you to drink 1 liter of water beforehand. I had had to practice drinking water early in the morning (the scan was at 7:30) for WEEKS ahead of time, because early-morning-water was one thing that had been consistently making me nauseous.
The genetic counselor explained that omphaloceles are usually associated with a chromosomal/genetic abnormality, like Trisomy 18 or 13. They offered to do a MaterniT21 test, which is a more definitive test for chromosomes 13, 18, 21, and sex chromosomes. I agreed, and they took some of my blood. This test takes about 7 days to come back. They wanted me to come back for a follow-up ultrasound in a little over a week, so the test would have time to come back. I didn’t know then that we wouldn’t even hear those results until I was lying in a hospital bed, recovering from a d&c.
So here’s the thing, when babies are developing in utero, their intestines grow so fast that they protrude out the stomach and into the umbilical cord. Somewhere before week 12, they’re supposed to have retracted entirely back into the stomach. This seems like poor planning on Mother Nature’s fault, but I digress. When I initially heard about this omphalocele, I thought that the timing was just off. I’d always had irregular periods, and long cycles. Maybe I was really still sub-12 weeks and the dating of the baby was off. The baby-dating process is just averages, anyways. Like, they decided that 1.5cm =8w1d (not actual measurement). And clearly, every baby is not identical. We don’t all arrive in this world weighing exactly 7lbs.
After the initial shock wore off, we really felt like this was nothing to actually be worried about. The dates were just ever so slightly off, and when we went back for the follow up ultrasound, everything would look good.
We went to a Halloween party that weekend and told all of our friends we were pregnant. I was 13 weeks.
Tuesday morning of the following week, at 13w5d, we went for the follow up ultrasound. This was specifically to look at the bowel and intestines, so she didn’t spend a bunch of time looking around.
The tech said nothing.
But it was obvious. The ultrasound looked like looking at a cross section of the torso, like if you sawed the legs off and looked up. A round circle of a torso. Except this torso quite clearly had an extra blob sticking off it. It was probably half the size of the torso.
The tech said nothing.
The doctor, who can say something, was not in yet. We had to wait. We went out to the hospital lobby and waited, pretty much in silence, for 40 minutes. We went back.
The tech said nothing.
The doctor finally arrived, and the tech ushered us in to a different genetic counselor’s office.
We didn’t even talk to a doctor that day.
But do you know who was in the counselor’s office? Yeah, that’s right. The medical student. “I remember you!” I said, as we walked in.
The omphalocele had not changed. It was still there. It was not something that was going to resolve on its own.
She started listing various issues that could be its cause or be caused by it. Including: kidney defects, renal failure, heart defects, neural tube defects, thick tongues, chromosomal malformations. 60% of omphaloceles are caused by genetic defects. I later learned that it has a 25-80% mortality rate, depending on the severity. Assuming it didn’t die in utero, it would likely have to be a c-section. The baby would be put in the NICU immediately and require an unknown number of surgeries to correct it.
They said they could do an amnio at 15 weeks for genetic data. An amnio takes 1 month to come back with all data. That is 19 weeks.
I’m not really sure how long we were there. I remember walking out of the office and seeing a woman waiting for her ultrasound. She had four kids and her husband with her. I remember thinking that that seemed incredibly unfair.
My parents drove down from their house that day to stay with us. A friend dropped off muffins. I got a migraine from crying so much.
By the next morning, I knew I had to end the pregnancy. It really didn’t matter whether it was a genetic defect or not. It was still a problem and could cause other complications, regardless of genetics. It seemed easier to end a pregnancy at 13/14 weeks than to wait until nearly 20. You could maybe feel the baby move by 20.
We called the genetic counselor, who called the women’s health coordinator at the other hospital. They only do “elective” d&cs on Fridays. This was Wednesday. At some point, someone said, “You should have started this on Monday.” (regarding insurance). Gee. Thanks. I spent a lot of the afternoon on the phone with my insurance, and then my primary care, and then managed care, trying to get it approved quickly. If they didn’t get it approved that day, I would have had to wait another week. Which, at the time, seemed like one of worst things imaginable. At 5:30 that evening, the coordinator called back. They got it approved and had had a cancellation. I had an appointment for pre-op at 8a the next morning. She mentioned something called “laminaries” and said they may or may not have to use them.
Laminaries (which I still have not googled), turn out to be tiny, thin little tampon-like devices that they insert into the cervix the day before the procedure to force it to dilate. They only use it after 14 weeks. Guess who was 14 weeks that day? I couldn’t catch a break.
After the pre-op, they mentioned there might be some cramping and discomfort. They sent me home with ibuprofen and Vicodin. I hadn’t been able to take ibuprofen in months!
Ok, so I haven’t been through labor, which I assume is worse, but this is my new high-water mark for pain. I had the most horrible cramps the entire rest of the day. Vicodin merely lessened the torture for an hour or two. I woke up at 3a, and never got back to sleep.
The procedure was at 7:30a and we had to be at the hospital by 5:30a. We waited a lot, and read some trashy magazines. When it was finally time, they took my glasses, and then asked me to walk down the hall to the OR. I couldn’t see. I followed the anesthetist.
I got on the bed. They strapped me down. Blood pressure cuff. Ekg patches. IV. I couldn’t see. They put those circulator cuffs on my legs. They attached this hilarious hose to the hospital gown. It’s some heating device and it puffs up your paper gown like a giant balloon. They told me they were going to give me some relaxing drugs before the anesthesia. The OB in charge was stroking my arm. I thought it was nice, but weird. That’s the last thing I remember.
I woke up shivering, violently, all over. Mike was there. One of the doctors must have been standing nearby, but my eyes were not open. I asked how it went. Mike said it went fine. The doctor told Mike I would probably ask that multiple times. In my stubbornness, I thought, “NO I WON’T” and resolved not to ask again. The shivering subsided after a half hour. I finally got to put my glasses on.
After an hour, they took off the ekg and blood pressure cuff and pulse monitor. I didn’t even realize I had it on, still.
Another woman was wheeled out as I was getting dressed, after having the same procedure after me. I felt so badly for her.
There was some blood. It wasn’t that bad.
Physically, I recovered quickly. I was eating normal food by the end of that day.
Emotionally, it continues to be a roller coaster, 3 weeks later. It’s not going to get easier for a while.