Losing Faith

Diagnosis: Trisomy 21

By Anonymous

I am 32 years old and I feel like my life has hit me like a bullet train. I thought, like most people, that bad things wouldn’t happen to me. Why? I don’t know, but I just was naive. Bad things happen to people all the time and it sucks.

I am a ballerina with a major ballet company and like many women these days I put off having kids because of my career. Also, big bellies don’t really mix well with tutus.

When I hit 30 I suddenly started thinking all the time about being a mom. So my husband and I decided that we would start trying soon. I suffered a major injury in April 2004 and knew I would not be able to dance for almost a year (had to get surgery) so I went off the pill. I had been extremely regular before going on the pill when I got married in 1996, so I figured I would just need a few months and then I would be regular again.

A few months passed with no period, and then I got two, and then nothing for six months! All the doctors assumed that it was because I was a dancer (too much exercise, not enough eating). But as I was injured and had not danced for 10 months I really did not think that was the problem. My doctor just wanted to put me on Clomid, but I knew something was not normal so I went to see a fertility specialist. He also guessed that my secondary amenorrhea was due to being a dancer but he did give me an ultrasound to look at my ovaries. He took one look at them and said he would have to eat his words because I had cysts all over my ovaries! I was shocked. He then told me that I would have to do a series of tests to find out if it was Poly Cystic Ovarian Syndrome (PCOS) or just plain cysts. It turned out I had PCOS and I had to go on a diabetic medication called glucophage.

Well I wasn’'t pleased with my diagnosis but I was glad to know what was wrong and that I could do something about it. He said I would need to go on Clomid in order to get pregnant and he was right. I tried naturally for four more months and then started Clomid. On the second round I got pregnant! I had just gotten back to dancing but I was so happy and ready to make the transition to motherhood!

My husband and I had been planning to spend two months in Europe since I had time off and he was in between projects; so off we went to Europe, happy and pregnant. I was eight weeks along. Being a dancer and watching my body change so much was at first scary, but I loved it. I loved my new boobs and my rounding tummy (I started showing early). I was lucky and didn'’t have morning sickness. I just had bad back pain, but I was used to that.

Everything was going well and I found a gynecologist in France that spoke English. She arranged for me to get my 12-week ultrasound in Monaco at the Princess Grace Hospital. I felt so special. Off we went to our ultrasound, happy as can be. My husband and I were both nervous but were so excited to see the baby. The doctor who did the ultrasound was very nice but didn’'t really speak any English, but we spoke French well enough to communicate. The ultrasound was amazing, 3D and in color. The baby was moving around, jumping actually. I was so amazed that I was looking at our future child. I was happier than I could ever imagine being. I couldn’'t believe what was growing inside me, I was in total awe.

Then things changed in a second. The doctor took the Nuchal measurement and he said it was out of range, 3.0. My heart sank, I was so nervous. Then he said he found no nose bones and said that we needed to get an amnio because the chance that this fetus had Down syndrome just went from one in 388 to one in 10. All my ability to speak French went out the window and I was just left there bewildered and scared.

I had a raging headache, we were in Monaco and all I could do was crawl under the covers. I rallied and went out later that evening but we were both in a daze and knew we had a long road ahead. I knew something might be wrong with the baby but I couldn’t get myself to really think about it. I had a lot of hope that like so many other people with high Nuchal readings and no Down syndrome; maybe I was one of those people. Besides, America hadn'’t even adopted the theory that no nose bones meant anything. I thought they must be right and this French doctor was wrong. He also said that I had a velamental insertion of the umbilical cord. This meant that the baby could be in danger later on in the pregnancy but that it wasn’'t a problem right now. I thought he was maybe wrong about everything. Maybe the baby's head was in the wrong position when he took the Nuchal measurement.

My husband (a scientist) and I read every study on Nuchal measurements, nose bones and velamental insertion that we could find in medical journals on the net. We talked with my doctor in New York (who turned out to be so amazing) and she recommended that I get Chorionic Villus sampling procedure (or CVS). It could be done right away and waiting for an amnio felt like torture.

So we took her advice and did the CVS, I was 13 weeks pregnant. I was so nervous for the procedure, not because I thought it would be painful but because I was worried about the risks that came with the procedure. If the test came out negative, then I felt that I would have been putting the baby at risk for no reason. Also I just was obviously scared of the results. The hospital in France was great. Everyone was very pleasant and nice to us. The procedure itself had a moment that was painful when the needle goes in, but it didn’t last too long. I went home to rest for then next 24 to 48 hours. I really wanted to be careful and take it easy and because I was so worried, I wasn’t up for doing much anyway. The next three days went by so slowly, but not as slowly as the next three weeks would be.

Monday morning arrived and we waited by the phone all day. By 4:00 p.m. I was a wreck, we just couldn’t wait any longer so we called the lab. We struggled with our French and were not able to get a result. In fact, the geneticist refused to talk to us and did not say why. Needless to say, this did not calm me down. Twenty minutes later our phone rang and it was the other doctor who did the procedure. She said that there was no Down syndrome but there was something wrong with Chromosome 9. She thought it may just be a mistake with the test (an artifact) but that they would have to wait for the cultured results and that would take a week! I frantically tried to ask her questions and she was very uncomfortable and said that she had never seen this before and she would talk to us in a week when she got the results.

I will never forget that feeling of helplessness. Trisomy 9 is very rare and now we were trying desperately to look for any information we could find about it. We were supposed to be celebrating the fact that the baby did not have Down and now we were finding out about a very rare chromosomal abnormality that came with even more complicated scenarios. After a day I started calming down and thinking about the baby. How I owed it to it to keep calm and to believe that maybe everything was okay. For all we knew, there was just a mistake with the test. I did not want the stress of the situation to cause a miscarriage. So my husband tried to plan things to distract me as much as possible.

The waiting made me crazy. We were in France with nothing to do and no friends, nothing to distract us. We just boarded ourselves in our little apartment and waited. Sometimes I went through all the possible outcomes in my heard and some of them I decided seemed impossible to survive at this point. Three days before we thought we would hear from the doctors, we were cooking dinner when suddenly the phone rang. My stomach sank. I knew it was the doctor and I sat down while watching the water boil over, staring at it and hearing my husband talking to the doctor. He was not sounding happy or relieved at all. I couldn’t believe this was happening to us.

I was in total shock and I grabbed my stomach and started crying. The cultured results showed T-21 on all cells and no T-9. How could this be? How could it have said no to T-21 on the direct but then on the culture be so positive? We were advised to do an amnio right away. It was Friday night and they could do one Monday and have the final results by Tuesday. Since this was looking like we were going to maybe terminate, I wanted to be at home back in New York. We called my doctor in New York and she worked on getting us an appointment for Monday, but couldn’t promise anything as it was the weekend. My husband booked an emergency flight home for Sunday and he settled everything that needed to be in order for us to leave. Meanwhile I just stared at the wall, and cried every time I saw myself in the mirror. I couldn’t stand the thought of loosing this child. I somehow got on the plane, got through the flight and reentry back home.

Monday morning came and my doctor called around for us eventually landing us an amnio appointment at 2:30. I was very surprised they could accommodate us so fast, and was thankful. My husband took me to the appointment, I was crying on and off most of the time and while in the exam room I started to shake a lot. I do that when I am nervous. I tried not to look at the images of my child on the screen. But at one point they listened to the heartbeat and tears started streaming down my face. The amnio went well and I went home to rest just in case this was all a bad dream. I was starting to realize it wasn’'t. I needed to start dealing with reality and that was not going so well.

I am writing this four weeks later and I still can'’t seem to accept the reality of the situation. My husband took care of me very well and stayed around all the time. When I heard the phone ring, I picked it up knowing that it was the doctor. She had a sympathetic tone so I knew my life was over, or so it felt at that moment. She told us it was T-21, the baby had Down syndrome. I handed the phone to my husband because I couldn'’t talk and I just wailed and wailed and wailed. My husband then joined me and we held each other crying. I was so scared, so mad and so sad. How was I going to survive this? How could I accept that this beautiful baby that I had inside of me was sick and now I had to decide to save it from a possible lifetime of pain and suffering? I didn'’t want to end this pregnancy that I had worked so hard to achieve and I loved being pregnant! I could not face the actions that lay ahead of me. I had to keep remembering and reminding myself that we were saving this baby, not killing it.

My husband thought we should get it all over with as soon as possible so I could begin the healing process so we scheduled the termination two days later. I was shocked to find out that I would have to go to an abortion clinic. I was so angry that my doctor didn'’t do it at the hospital. This made me feel even more like I was doing something so evil. The days leading from the news to the day of termination were awful. I couldn'’t look at myself in the mirror, I couldn’t even put cream on my body. I just stayed in bed and cried.

The morning of the worst day of my life came and I was shivering and just terrified in general. I wanted to run, run so far away from my life. I wanted to wake up from this nightmare to find that every thing was okay. But it only got worse. Walking into that abortion clinic made me so nauseated. I believe in the right to choose, obviously, but seeing people who were not in my predicament was very difficult.

Luckily, my doctor had called ahead to tell them I was coming and explained my situation so they put me in another waiting room. I was very thankful for this but then a woman came in with a child. She got on her cell phone to call her boyfriend to notify him she was getting an abortion and she was going on about isn’'t it so funny how some people have pay lots of money for Clomid treatments and she just seems to get pregnant at the drop of the hat if I had had a gun, I think I would have shot her. Didn'’t she see me convulsing and sobbing!

I was called in for an ultrasound and the technician asked me questions like “were you being followed by a doctor prenataly and why are you terminating?” I just couldn'’t stand it. Then I met with the social worker that gave me medication to put on my gums to dilate my cervix. There was no turning back. Putting those pills in my mouth was so terrifying. I just sat there and sobbed, I have never been so sad, so angry about my life. We had to wait an hour and a half and then it as time for the procedure. This is when I had to part ways with my husband and the next time I would see him again, I wouldn’t be pregnant anymore.

The next part of this ordeal was the worst. Walking into that room on your own, lying down on the table while they place a garbage bag underneath you...how could they do this to me while I was still awake? I was crying and shaking and no one in the room would look at me. They all stood there looking away, just going about their job. Finally the ultrasound technician grabbed my hand as they put me to sleep. Waking up, I felt so empty and weak. I couldn’'t believe it was over. I was no longer pregnant. I had saved this child but I would never get to meet it and I did not feel like a savior at all.

Six weeks later and I am still on a roller coaster. I get so sad and angry and I miss my baby so much. I had a severe bout of depression where I was a bit suicidal. I did not want to face myself, the world, or the life that I now had. I didn'’t feel like I could be responsible for how I behaved. I was out of control and I felt so lost. My husband and sister got me help and now I am feeling hopeful again and ready to fight the challenges ahead. I know there will be a lot of ups and downs still to come for a long time but I will not hide from my life. I want to get pregnant again and that is what I am going to work on as soon as they let me.

Thanksgiving is here in a couple of days. I thought I would just be miserable and feel like I have nothing to be thankful for. In fact I had the right to be distinctly unthankful and angry about what has happened to me. Strangely enough, even with all my sadness, I am thankful for my husband who has seen a side of me that isn'’t in the fairytale books. But he is still here, and that is a fairytale. I love him so much and I know that with him and all the support that I am lucky enough to have, we will overcome this terrible tragedy in our lives.

I hope this helps others to have hope and to remember, you are not alone in those times of darkness. Someone else is right there with you and you can get to the other side.

I will never forget the baby growing inside of me. I will love it forever with all my heart.


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