Losing the Dream

Diagnosis: Trisomy 21

By Wendy

On June 28, 2012, I received the unimaginable news that the baby I was carrying had Down’s Syndrome. It was devastating. My journey had already been so long and difficult. I couldn't believe it was about to get so much worse.

I am a single woman, never married, who finally decided at age 36 to have a child on my own. I have always been very independent and although I have had some wonderful relationships, I have never been close to marriage. I had always told myself, since my 20's, "If I don't find a husband, I'll just have a baby on my own."

I never took myself very seriously, because I thought I'd meet the man of my dreams eventually and we'd have children together and it would all work out perfectly. I didn't stress out about it too much in my thirties because I believed I still had time. I knew the reports about decreasing fertility after age thirty-five, but I also knew of so many people who had no problem getting pregnant in their late thirties. Finally something clicked soon after I turned thirty-six and I realized I better start now on my own or I might never get the chance.

I chose donor sperm and started the process with IUI (Intra-Uterine Insemination) at the local fertility clinic. When the first three attempts didn't work, I didn’t lose hope. But then my doctor ran tests and told me that my ovarian reserve was surprisingly low. We changed the approach and I started using injectable medications to increase my chances, in addition to multiple vitamins and supplements to try to improve egg quality. Three more attempts also resulted in failure, and I started to lose hope.

After six failed IUI attempts, it was advised that I try IVF. I had already spent so much money (no insurance coverage for infertility) and couldn't imagine the amount of money it would cost to do IVF, but I was determined to become a mother.

I was fortunate to have a decent response and they retrieved eight eggs, seven of which were mature, and four of which were successfully fertilized. Three days later, three of those four eggs were still developing. They advised me to transfer all three embryos to increase the chance of success.

I didn't have any signs or symptoms during the next wo weeks, so I was surprised and thrilled when the doctor called with results of my blood test that I was pregnant! It was an unbelievable feeling! My fantasies ran wild as I could finally believe that I would have a child in my arms!

The next week was difficult, as the doctor ran blood tests every two days to be sure the HCG levels were raising appropriately. Unfortunately, my level plateaued and I was told this was likely a non-viable pregnancy. I was crushed, and grieving the loss already.

A few days later, a repeat blood test indicated that my levels had increased dramatically and I was indeed pregnant! What a roller coaster of emotions!

I am an ultrasound tech and was anxious to scan myself to see the early development of my baby. I was shocked when I found TWO gestational sacs! In the next week or two, I confirmed that they both had heartbeats and I would be having twins!

I had never really prepared myself for this possibility, since I was told I'd be lucky to get pregnant at all, let alone with twins! I wasn't sure if I could raise twins as a single mother, but I quickly got used to the idea and couldn't believe how fortunate I was.

I scanned myself frequently just to see how the babies were doing. When I was nine weeks along, I had the worst shock of my life (up to that point) when I found that one of the babies had passed away. The heart was no longer beating.

I was absolutely devastated, and had a very difficult time grieving for this lost child. I knew that miscarriage is usually due to a chromosomal abnormality, so I eventually consoled myself with the idea that it was for the best and that it wasn't meant to be. And at least I was still pregnant!

At 11 weeks, I had a CVS because I knew there was an increased risk for chromosomal abnormalities at my age. I was a little nervous about the risks of the procedure, and had a long talk with the genetic counselor about my options.

She assured me that the doctor would tell me honestly if it looked like a technically difficult procedure, and advised me to let the ultrasound tech take some images first, to let the doctor decide.

During the ultrasound, the tech and I talked openly about everything. She showed me that the nuchal translucency was normal (1.4mm) and the nasal bone was present. These two findings usually rule out Trisomy 21. Everything else in the scan also looked perfect. And the doctor told me he felt very confident that the CVS would be an easy procedure, so I went ahead with it.

For the next week, I couldn't contain my excitement. I knew that within a few days I would have confirmation that my baby was healthy and I'd know the gender! I made plans for how I would break the news to various groups of friends and the people at work. I eagerly awaited the phone call with the results.

I missed the phone call at the end of the day on Wednesday, and was frustrated to have to wait until the next day for the results. I called every 10 minutes trying to reach the genetic counselor. Finally, as I walked into the hospital for work, I received the phone call. I sat down in the lobby and got ready to hear the good news.

"The CVS results are consistent with Trisomy 21, or Down’s Syndrome." The rug was pulled out from under me. I was so unprepared for this. It just didn't seem fair after all I had been through. This had to be a bad dream. This could not be happening to me.

I began grieving for my child that day, although I didn't terminate the pregnancy for two more weeks. I pretty much knew my decision, but there was some uncertainty about the test. Since I had a fetal demise of the twin, there was some question whether the CVS sample could have accidentally come from the other baby (which was still present in the uterus).

I knew in my head that it wasn't really possible, because I had watched the CVS on the ultrasound screen and I knew the location of the placenta in relation to the demised twin, but that tiny bit of doubt scared me.

I didn't want to go through with termination if there was the slightest possibility of a mistake. So we waited until I was fourteen weeks, the earliest possible date for an amniocentesis.

I knew the results would be the same, but I started to fantasize about the possibilities for the unthinkable, against my will. What if this time the results were different? What if my baby really is healthy!?! What an incredible story it would be, and a fitting last twist and turn on this roller coaster ride of a pregnancy. But of course, the call with the FISH results confirmed Trisomy 21.

I had made up my mind long before I even got pregnant. Deep down, even though I rarely entertained the thought, I knew that if there was a chromosome abnormality, I would choose to end the pregnancy.

This was not a decision that I took lightly, though. As much as I went through to have this baby, I couldn't believe I was in this position. Every decision seemed selfish. Selfish to have the baby and let it endure a lifetime of medical and mental challenges. But also selfish to end the life of a child who hadn't even had the chance to live.

I am ashamed to admit that I wished the baby would pass away before the procedure. If it happened naturally, then I could be relieved of my guilt and able to be open with people about the situation.

However, I was fortunate to have the support of friends and family who agreed that the decision to terminate was the right choice for meAs a single mother, I knew I would not be able to provide the type of care necessary for a child with such special needs. Since I work in the medical field (and previously worked in the child development field), I know a lot about the implications of Down’s Syndrome. It is associated with so many serious medical problems that go beyond just mental retardation.

Despite making this strong argument to myself, I couldn't help but wish for a more serious diagnosis. Because Down’s Syndrome isn't a death sentence. If I had been told it was a genetic abnormality which was incompatible with life, I wouldn't feel so guilty and wouldn't have such a difficult time telling people about my decision. Everyone would agree and sympathize that termination was the best decision.

But Down’s Syndrome is a condition that a child can live with, and people choose to continue pregnancy even when they get this diagnosis. So I am overwhelmed with guilt and shame about my choice. I feel selfish for terminating because I didn't get a "perfect baby." I can convince myself that I made the right choice, and almost everyone who knows supports me, but I fear they think less of me. How can anyone understand that I want to be a mother so badly after I terminated a pregnancy? I feel validated in my reasoning, but I know that others wouldn't agree.

The day of the D&E procedure was terrible because of the pain. I took Cytotec that morning and had severe cramping, diarrhea, and vomiting. And the procedure itself was done with only mild oral sedation so I was very awake and aware.

I had anticipated being overwhelmed with the emotional distress of the procedure, but actually I was overwhelmed with the physical pain. I told myself this is what I deserved. I had a very difficult time in the first week after the procedure, as my hormones dropped and I was overwhelmed with anxiety and depression. Over time, my hormones leveled off and I regained my sanity. My emotions are still raw, however, and it's difficult to think about the future.

My network of support has been wonderful and really helped me to deal with all of this. It's just so difficult. I have found forums for people who have terminated for Down’s Syndrome, and it has been so helpful to read their stories and hear that many others have experienced the same thoughts and feelings that I was ashamed to admit.

It will be difficult to proceed from here. I'm scared of trying again, but I'm finally accepting that I have every right to try again to become a mother. Part of me wants to continue to punish myself with the thought that I don't deserve to have a baby since I made the decision to terminate a pregnancy. But the part of me that knows better, that knows I am meant to be a mother, is getting stronger every day.


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