Tuesday, April 3, 2007

Backstory 2: Diagnosis of Trisomy 18 and Prepping for the D&E

With all the brash, ugly drama that surrounds abortion in general, let alone second trimester abortion, you would think that there would be a great deal of discussion and debate amongst medical professionals and pregnant women about what should be done when a poor prenatal diagnosis is made. I can't speak for others, but for me, I found that when I was in a real abortion situation vs. a theoretical debate, the world got very , very quiet. DH and I spent the three weeks between our positive screening test and the amnio results researching Trisomy 18. We read everything from textbook descriptions of the disorder to memorial websites for T18 babies authored by prolife parents who urged others to carry their sick babies to term. But no medical personnel involved in my and the baby's care ever offered any opinion on what we should do. Nobody even offered us any sort of way to frame such a decision. So we muddled through on gut instinct.

Our decision was ultimately based on three factors: 1) What would the baby's quality of life be if we carried her to term? 2) What would our whole family's quality of life be like if we carried to term? 3) What scenario was the safest thing for me, healthwise?

In a way, DH and I were lucky: the answers to our three questions did not conflict with one another. From everything we read, we felt the baby would have a miserable quality of life and would likely not survive longer than a few weeks or months. We were certain that continuing a doomed pregnancy would severely limit our ability to meet the demands of parenting Big A, then just two years old. I also feared the inevitable strain on my marriage and psyche. And healthwise, we knew it was statistically safer to terminate than it was to carry to term. For us, everything seemed to point toward interrupting the pregnancy as the best of two crappy choices.

Since the genetic counselor was the one who called with our bad news about the trisomy 18, she was the one that got to ask the question first: "Do you want to continue the pregnancy?" When I said I didn't think I did, she said she would call my OB for me and have her call me back shortly. In the meantime, I broke the news to my husband.

The rest of the family seemed truly shocked as we told them, almost as if it had not occurred to them that we were serious about the baby's likely problems when we'd broken the news earlier about screening positive (with a 1 in 5 calculated risk for T18) in the NT scan/maternal serum test. But DH and I were actually a little bit relieved at this point. Waiting for the diagnosis after the positive screening had been a special sort of hell. Now at least people would stop telling us to keep our fucking chins up. Now at least people would understand why we had been so distraught.

My OB called within the hour. She let out a deep sigh and said "I'm so terribly sorry." She asked me if I wanted to continue the pregnancy and I said no. Then I asked her if she thought this was a good decision, and she truly seemed at a loss for words for a moment, as though patients did not usually ask for her opinion in this matter. "Yes," she finally said. "I think it's a good decision."

We talked about my recent diagnosis of complete placenta previa -- a condition where the placenta implants directly over the cervix. If I went into labor with the placenta in this location, it would tear when my cervix dilated, cutting off the baby's oxygen and putting me at risk for extreme blood loss. Women with previas require a c section because of this. The perinatologist who did our amnio had diagnosed the previa and said that he didn't think mine would resolve on its own, so I should be prepared for a c section delivery if the baby turned out to be ok. Now that we knew the baby had a fatal disorder, I wondered if terminating the pregnancy could be done via the normal/common method (dilation and evacuation) given the complete previa.

My OB admitted she didn't know the answer to that question, but said she would find out for me. This is also when I learned that my own doctor would not be the one performing my termination. The idea of going to someone else was overwhelming, but my OB explained that she couldn't do it because she hadn't been trained to do the procedure that was needed at this point in the pregnancy. She said she knew two doctors that she trusted who could do it for me, though. She would call them and see who was available.

But we had a complicating factor: With Christmas just a few days away, there was a real likelihood the termination would not be scheduled until after the holiday. The idea of going through Christmas pregnant and knowing what was to come was just terrible. But I thanked her for at least warning me, so it wouldn't come as a nasty surprise.

Within a half hour or so I got another call. It was a the referral OB (whom for clarity's sake I'll simply call Dr. Surgeon here).

"I'm really sorry to hear about your baby," Dr. Surgeon said. "I wanted to let you know that I've rearranged my schedule and made some calls to the hospital and managed to get an OR and a team pulled together. I wasn't sure if it could happen at first because of the holiday schedule, but it looks like we can do the procedure tomorrow."

"Thank you so much," I said, choking back tears.

"You're welcome," Surgeon said. "You do have to come in today, though. We need to start dilating your cervix overnight so we can do the procedure tomorrow morning."

I hung up and quickly arranged to have Big A, then barely two years old, watched by relatives. We had opted not to tell her about the pregnancy until later, a decision that I was so thrilled about at that moment. At least our first discussion about death with her didn't have to be about this.

DH and I went to Surgeon's office. Surgeon was a regular OB, so her waiting room was filled with happily pregnant people and posters extolling how to conceive and maintain happy, healthy pregnancies. Luckily there were no windows to jump out of. We were also lucky that the receptionist had been briefed on our situation and didn't loudly interrogate us regarding the reason for our appointment.

We were shown into a room eventually and I was told to put on a gown. Surgeon arrived and talked for a few minutes. Even though we knew what the answer was, we asked if there was anything we might have done that had caused the trisomy 18, and Surgeon said it was just a random error -- probably I ovulated an egg that was poorly formed, and we had the bad luck of trying to conceive that particular month. Because I was nearly 35, the risk of it happening again was probably less than a two percent.

Surgeon explained that she was going to insert laminaria, sticks made of seaweed, into my cervix so that it would dry out and naturally dilate overnight. Since I was 16 weeks pregnant, she would only need to do laminaria insertions once -- later pregnancies need more. She said laminaria were more gentle than simply using mechanical dilaters during the procedure. "[Your OB] and I want to preserve your ability to have future vaginal deliveries," she said. Surgeon added that while I couldn't go through labor and delivery with a placenta previa, that I could have dilation and evacuation (or a "D&E") with it safely at this point.

"I know this isn't going to be the happiest Christmas ever for you," she said. "But, I think getting this over with before the holiday will be better than the other option." She said that we could try again as soon as I got a regular period back again.

Then, she told us about the D&E itself. It would be done under general anesthesia and take about 15 minutes. Most of the time I was in recovery would just be sleeping off the anesthesia. I would be in pain afterwards -- like a bad period. But regular Tylenol or Advil would take the edge off. She said to take it easy once I got home from the hospital for a day, and to resume normal activities as I felt up to it after that.

"There are a few possible complications," she said. "But they are rare. Statistically, D&Es are safer for women than giving birth. Things that might go wrong include that you might get an infection afterwards that requires antibiotics. Or you might need a D&C later on, if I didn't manage to clean your uterus out as completely as I should. Also, if I slip with an instrument there is a chance I could perforate your uterus." She smiled. "I've been doing this procedure for ten years, and I haven't perforated anyone yet. Likely everything will go just fine for you."

She asked if we had anymore questions before she did the laminaria insertion. I said I did. "Afterwards, I know we can't see the baby ... but could we arrange to have the remains cremated? Or could we at least get footprints to keep?"

Surgeon shook her head no. She didn't elaborate why, and I couldn't bear to ask.


Lori said...

I truly cannot even imagine what this experience was like for you, the person actually living it. Just reading about it put my stomach in knots and brought tears to my eyes.

I am so, so sorry for your loss.

Antigone said...

I'm so sorry.

Anonymous said...

Your story was so similar to mine. I am so sorry for your loss.

Anonymous said...

My wife and I were told the bad news last Friday on the ultrasound at 20 weeks! We had an amnio right there and got the results back the following Tuesday (it is a different kind of helll waiting for the results). It was confirmed amnio and we are now in your exact situation. We were having our care at a Catholic hospital (we are not Catholic). Nobody recommended what to actually do, but gave us the two options. We have decided not to put the baby or our family through a live delivery that will most likely never come. I have read for hours and hours on trisomy 18 and it is bleak at best. We have decided to terminate and have had no help from our OB. We are currently looking for some professional advice from another hospital and OB. My heart hurts more than ever right now and it pains me that there is no support from our care provider once you actually make the decision to terminate. I feel for everyone that has gone through this and the ones yet to come. This article really helped me that we aren't the only people to see this awful process. I only pray we can some day give a child a great home.

Anonymous said...

Thanks for writing this...I just had the screening test that came back positive for 18, and I see the specialist Mon for the amnio. I also have placenta previa...I hate this situation, but it's nice to know someone else feels the same too. Best wishes to you.

Anonymous said...

I deeply thank you for writing this.

Your story sounds so much like mine... After finally conceiving through IVF we just learned our baby has Trisomy 18. I'm 18 weeks pregnant and am scheduled to do the D&E on Friday. You're right - it's the better of two really crappy choices.

Best wishes to everyone on this site - it's not an easy place to be.