Cynthia’s story, Part I: Pregnancy, Diagnosis & Decision

Posted on Posted in D&E, Stories, Trisomy 21 (Down syndrome)

By Cynthia E.

Cynthia's Story, part 1
We were supposed to be on vacation. Good grief!

Pregnancy, Diagnosis & Decision
Editor’s note: This part one of a four-part series. It is a brave and unflinchingly honest story involving a rare medical emergency during a clinic D&E, and we applaud the author for her courage in sharing it, and offer our condolences on the loss of her baby and her fertility.

As my second pregnancy progressed, I worried how I would handle two children. I’d had a c-section and struggled with breastfeeding. How could I go through all that again, but this time with a toddler, too?

I had found the only doctor around that would do VBAC (Vaginal Birth After Cesarean). I felt really good about the possibility of having this baby vaginally. I knew it would be more painful during the delivery, but the six weeks that followed would be infinitely easier.

After the first ultrasound, Steven and I began telling our close friends the joyous news, but did not make it Facebook public. There was still one more obstacle to overcome before we could go public with the pregnancy. Being 38 years old, the likelihood of genetic defects is always a risk.

Because of insurance issues, my Ob-Gyn had set us up to pay ahead for the delivery. Every month I was paying upwards of $600 toward the delivery. We had not budgeted for this expense and my credit card was maxed for the first time in my life. Financial tensions were building, and Steven and I were arguing. I thought, shouldn’t this be the happiest time of our lives as newlyweds with our beautiful, healthy toddler Sabrina and a new baby on the way?

While driving Sabrina home from the park, I got the first call from the high-risk pregnancy doctor. Based on the pre-screening, he said our baby’s risk for Down syndrome was elevated to 1/30. At my age it should have been 1/128. I agreed to take the Harmony DNA test to determine if the baby had Trisomy 21.

“What do you want to do if the baby does have Down syndrome?” Steven asked when I called to tell him.

I paused and thought about the difficulties we’d had with Sabrina up until that point, and then thought about adding a child with a serious handicap to the equation. “I don’t want to continue the pregnancy if there is Down syndrome,” I said. “What do you want to do?”

“I’m not sure,” he said.

“OK. Most likely we won’t have to make this decision anyhow. Let’s just wait for the test results.”

After the blood test, Steven and I had a few pillow talks about the unknown results. We told ourselves that if it was the worst, we’d try again. This thought set our minds more at ease.

We were on vacation in west Michigan, and in the car when the test results came through. I put the phone on speaker for Steve and together we received the terrible news. The Harmony DNA test had come back with 99% accuracy that our baby had Down syndrome.

Still, I clung to hope. “So this test is not as accurate as the amniocentesis? What is the false positive rate?”

The doctor said it was a newer test and he’d seen both false positive and false negative results. I had worked in a neurology lab between my undergrad and graduate work, so I knew that human error is always a possibility. I was not ready to make the decision based upon this test.

I told Steven I needed to know with 100% accuracy before I could make a decision. He was worried about finances and didn’t want to jeopardize our family’s financial future for a second test. I agreed that we needed to determine how much it would cost to do an amniocentesis.

At my parent’s house in Michigan, the grief of the test results sank in. We held each other and cried over the most likely loss of our baby. We told our parents what was going on and they were supportive.

The next morning we found a place in west Michigan that would perform the amniocentesis on Thursday for $500. We felt it was worth it to know for sure. I tried to put this out of my mind, clinging to the hope that the first result was a mistake. After all, we were supposed to be on vacation. Good Grief.

At the amnio appointment, the ultrasound technician examined the baby for Down syndrome markers. I was thinking, why are we doing this? We already had a test telling us that the baby had Down syndrome. What good will it do to see markers in the ultrasound? She did a more detailed ultrasound that I’ve ever had done, looking at the internal organs and explaining how they were functioning. She asked if we wanted to know the sex of the baby. We said sure. She said it was a boy. A boy. I was hoping for a boy. I know Steven wanted to have a boy to do guy stuff with. My hope rose.

The doctor brought us in for counseling and explained what Trisomy 21 is and what kinds of deficits the baby could have. He told us all about other genetic disorders and asked for a full genetic history from both of us. I still wonder what all the purpose of this was. Finally, he talked about the risks of the amniocentesis. There’s a risks of nicking the baby, but he planned to go in near the feet. There’s a small risk of miscarriage with second trimester amnio, about 1/400.

The day after the amnio, Steven drove back to Texas and Sabrina and I stayed in Michigan. We were vacationing with my mother and aunts at a cabin. Walking back from a lakeside boardwalk in Holland, Michigan, I got the call with the FISH results. They were consistent with the previous test. I asked him if the final results would be different, and he said it was unlikely, but that I should wait for them before making any decisions. My heart sank.

I clung to the hope that the first DNA test was erroneous. I asked him if terminating the pregnancy was something we could do through them. He said no, but referred me to a place that would.

With a heavy heart I called Steven and I told him about the FISH results, and that the doctor suggested we wait for the final results. Somehow delaying the official announcement of the bad news seemed to make it more tolerable.

Later, my ob-gyn from Texas called. I asked what he thought about awaiting the final results. He said the FISH test was just as accurate. I told him that we wanted to terminate the pregnancy and asked if he could do that. He said he would, except the hospital he has privileges at does not allow any abortions performed on a fetus with a heartbeat.

That night I was not feeling well. My aunt offered me some aspirin. My first thought was, “is that on the list of approved drugs I can take?” I had been very careful throughout my pregnancy, and even before, to avoid anything that might harm my baby. I had the horrible realization that it didn’t matter anymore. This baby would not be born. I took the aspirin.

My doctor in Texas provided the name of a clinic near my home, but when I called them and explained my situation, they said the procedure was going to be $2,400 if I waited another two weeks, and that the price would rise by $400 per week.

I looked up abortion in the phone book I found at the cabin. The only listing was Planned Parenthood. They referred me a different women’s clinic, and the earliest that clinic could get me in was a week from that day because there is a mandatory waiting period in Michigan. To complicate matters, I was so far along (17 weeks) that the procedure would take two days. No children were allowed and I’d need a driver on the second day.

Steven wanted to come to Michigan to be with me for the procedure, but I was scheduled to fly back to Texas two days afterwards. The procedure had a one day recovery time and they assured me that I’d be able to keep my flight. Considering our finances, I couldn’t see having him fly in for just a couple of days when I’d be home two days later. I told him that I had family here to help me and that we could make it work.

Sabrina had not warmed up to my aunts, so we would need my mother to stay with her at the cabin and one of my aunts to drive me home after the procedure. I felt terrible for putting them in this position during their vacation, but my mother and aunt were supportive and wanted to help.

My aunt said, “You’re doing the right thing. This baby will never be right. You will have to take care of him for the rest of your life and when you’re gone, the responsibility will fall to Sabrina.”

My very religious Aunt Susie asked about the baby. We had left her out of the loop, but she had deduced that something was wrong. In her eyes, abortion is wrong no matter what the circumstances. I was not prepared for her question. I racked my brain for some version of the truth. I said “The doctors think there is a problem genetically with the baby and they are concerned.”

“Well,” she said, “I hope you’re not going to do anything extraneous.”

I was silent, but then she told the story of how her mom had twins, one of them stillborn and the other “a blob” but alive. She chose not to have the doctors try to save its life. That’s what she meant about not doing anything extraneous.

Thankfully, she let it drop there.

 

Read Part II of Cynthia’s Story.

Quick links to all posts in Cynthia’s story:
Part I: Pregnancy, Diagnosis & Decision
Part II: Clinic, Protesters & Disaster
Part III: ER, Emergency Surgery & Anger
Part IV: Recovery, Grief & Decisions

 

photo credit: chairs via photopin (license)