The Tip of the Iceberg

Mar 14, 2015 | Stories, Termination after 24 weeks

I was terrified, but my terror ended the moment I met Dr. Tiller. He was a wonderful and gentle man.


This happened a long time ago, but it will stay with me forever.

In the beginning, I felt an uneasiness about that pregnancy. I can’t explain it. It just felt different.

I was 16 weeks along when we received the first piece of frightening news. My triple screen came back indicating a rare genetic disease. I followed it up with the amniocentesis and waited two long weeks for the results. They were negative for all three major chromosomal disorders (Trisomy 13, Trisomy 18 and Trisomy 21) and for the rare genetic disease. My husband and I were thrilled.

At 18 weeks we had an ultrasound done and our baby looked absolutely fine. They gave us pictures of her. Then at 21 weeks we had another ultrasound, and that seemed to be going well too with the technician telling us how beautiful our daughter looked. Everything appeared normal as we watched her moving around on the ultrasound monitor.

The doctor came in and began doing a more detailed scan of her bowels. He found a problem: meconium peritonitis. The calcification that was forming in her bowels was just beginning to show, although they said it had probably occurred earlier in the pregnancy.

For the third time we were sent to see a genetics counselor to go over the medical prognosis for our baby. They gave us a bunch of statistics and some horrible possible outcomes. After that, they tried to reassure us that it was “probably nothing” and that “everything would be OK.”

Our next steps were to get some blood work done and have the amniotic fluid tested. Again we had to wait two more weeks for our test results.

We were very relieved with the results of those tests: everything looked OK. Our baby girl might need surgery immediately after birth to correct her bowels, but even that was only a “maybe.” All we had left to do was come back for another ultrasound to check that her bowels weren’t getting distended.

During that ultrasound we were again told that everything looked normal. Then the doctor came in and did a detailed scan of her brain. He said he saw some “shadowing” in her brain. We returned to the genetics counselor for the fourth time, and this time they gave us our “options.”

I was 23 weeks and four days pregnant. This meant that if we were choosing to end the pregnancy we had to decided that day. But our medical professionals had said that they didn’t have enough concrete evidence to warrant ending the pregnancy, and instructed us to come back and have our baby’s condition rechecked when I was 32 weeks along.

During that conversation with my doctor I picked up on something: it seemed she really did think there was something wrong but was not willing to risk misinforming us, in case it was nothing. Because of this, I insisted on coming back in just two weeks for another ultrasound instead of waiting the 9 weeks she’d recommended. I’d been told enough times over the ups and downs of this pregnancy that “everything is fine” and “nothing is wrong.” I was no longer convinced.

The hardest part of this experience was knowing that having to terminate my pregnancy could very well be an outcome. In our country, the cut-off for legal abortion is 23 weeks 6 days. If we were going to to take the route, we would have to decide before we left the hospital that day.

I was terrified. How could I possibly make that momentous of a decision based on what little, and at times conflicting, medical information we’d been given? Well, I simply couldn’t.

Two weeks later and 26 weeks pregnant I went to my next ultrasound, alone. That scan, which took almost two hours, would change my life forever. It showed that her brain had severely calcified, parts of it were asymmetrical and there was fluid on her brain, or Hydrocephalus.

I begged the doctor, “Please just tell me the truth. I need to know.”.

She said said that she had no idea what this meant but that she felt something was terribly wrong. Within the two weeks my daughter’s brain had gone from “normal” to massive problems.

Once again, I was sent up to the genetics department, and this time the counselor had me speak with the head genetics doctor himself. I had them wait until my husband arrived; I just couldn’t go through this alone.

The genetics doctor also felt something was terribly wrong with my baby, but had no idea what it was. “This looks like the tip of the iceberg,” he said.

The hardest thing I’ve ever had to do in my life was to decide to terminate this pregnancy. Two days after that ultrasound I was seen by a group of perinatologists. They said they’d never seen this combination of problems before and they couldn’t predict what the outcome would be. They couldn’t even give us statistical information on what her life might be like, what her abilities might be, or her limitations. They did say she might die in utero, or shortly after birth, or she might survive in a persistent vegetative state, or just maybe her problems would be nothing more than some mild learning disabilities. They said we could wait another two weeks, then have another fetal scan and possibly an MRI.

How could I go on another day, let alone two more weeks? It broke my heart to feel her move around inside. The situation was simply awful.

We had another appointment, this time with a doctor performed pregnancy terminations. He said now that I was now 27 weeks pregnant, he couldn’t provide me with the kind of abortion care that I required. That’s when we were referred to Dr.Tiller.

I was terrified, but my terror ended the moment I met Dr.Tiller. He was a wonderful and gentle man. I arrived at his clinic on a Monday and gave birth to our baby girl on Friday. We were able to hold her afterwards, and say our goodbye’s. Dr.Tiller will always be in my heart.

For a long time I felt that what happened wasn’t real. I missed feeling her inside of me. I missed singing or talking to her, touching my belly and have her respond. The hardest part is never getting to see her smile or laugh, or to watch her grow up. A day doesn’t pass that I don’t think of her. I miss her so much.

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