Taylorfireflies

“I’ve always been pro-choice.” I read this phrase on a blog I follow. It came as a shock to me considering the community we’re in. But it inspired me to write my story, if only to be able to remember it forever. I may choose to share it when I’m ready. But for now, this is my secret… our secret.

You see, I’ve always been pro-choice, too. I do firmly believe everyone has the right to choose what to do with their lives. If this means ending a life that you feel you cannot take care of or are not ready to do so for whatever reason, you should be able to do what you choose. You should have thought about it sooner, true, but what you choose to do is no one’s business but your own.

It is a choice that will haunt you for the rest of your life. That I know. It will make your days miserable and your life hell. You will try to avoid these feelings, these horrendous thoughts… but whether it is right away or years later, the scars will show.

Having been born and raised in a developing country, where termination is illegal, I know the odds of encountering pro-choice people in my life. So it’s something I barely talk about. Therefore, the anonymity of the blog.

I am grateful to have had the chance to fly to the States; to have been able to choose to terminate our pregnancy due to fatal fetal abnormalities. I am grateful to have been able to do so at BWH, recognized as one of the nation’s top hospitals. I am grateful, but this doesn’t change the fact that I am hurting.

Here’s my our story.

For the first time in my life, earlier this year, I felt ready to have a baby. I was happily married and had the financial conditions to bring a life to Earth. Little did I know that even though I thought I was ready, life had an opinion of her own.  I had a missed miscarriage at eight weeks, just a week after I had announced to my husband and family that I was pregnant. I was put on progesterone shots because my levels were lowering. I remember asking when my due date was (I have very irregular cycles), and my doctor telling me not to worry about it, that we would “talk about it when the time comes.” I now know he knew I’d miscarry over the weekend.

It was Monday, March 31st. I went in for the ultrasound and there was no heartbeat. The sac had ruptured. I had two options, I’d wait to miscarry on my own or have a D&C (the latter was not really explained to me -and I didn’t ask much either- except that I was to be put under and once I was out I wouldn’t be pregnant and have little to no bleeding). I had the D&C on Tuesday, April 1st. It was a horrible experience (due to the conditions the OR was in). I remember everything perfectly, and it was plain horrible. Although my heart was shattered, I was physically well. I went in to work the next day.

We were told that we only had to wait one cycle, which then seemed like forever. I was put on birth control pills and 21 days later I was bleeding. Since I have such an irregular cycle (35+ days), I was put on Clomid to try to get me to ovulate on time. Despite the Clomid, I ovulated late but somehow managed to get pregnant. I had progesterone shots every single day for nine weeks. We had a “healthy” baby with a beating heart, a 16-week baby with a beating heart. Everything seemed perfect. My early screening (at 12 weeks) was great. Not one day of morning sickness.

At my 16th week I had an ultrasound, and immediately saw a bright white spot inside my baby’s heart. I knew something was off. My doctors told me it was normal, that the spot would go away on its’ own. But I still worried.

At the anatomy scan (at 18w6d), we were told that the baby had four to five severe heart abnormalities, a brain abnormality (there was a part of the cerebellum missing), cleft lip and palate, and a two vessel cord. They suggested it could be one of the fatal trisomies (13 or 18, as I had no odds for 21), and should think about termination. I was offended. How could the doctor throw those words at me so lightly? How could she suggest termination without giving me other options? How could she suggest termination for such a wanted pregnancy? And the answer was simple: medically, our baby wasn’t “viable”. Medically, our baby was not a life, but a couple of organs that did work, and once born, could not work correctly without the cooperation of the rest of the body. In other words, our baby, my life, wasn’t really considered a life for doctors.

We then saw a cardiologist, who got my hopes up when she told us after two hours of ultrasounds and echocardiograms, that “it was fixable”. Later that week, we flew up north to confirm the diagnosis. After multiple ultrasounds, more echocardiograms, and an MRI, the doctor literally drew out for me what a “normal” heart looked like, and what my baby’s heart looked like.

I’m an artist. So I can honestly say that for the first time in this entire process, I understood, without her saying a word, that my baby wasn’t “fixable”. She told me that the baby would most likely die in utero. I kept asking: “what if he survives?” And after carefully explaining all the medical reasons why he wouldn’t, they gave in and gave a “what if scenario.” If the baby survived and was born, he would not be able to eat during the first week of his life, because they had also found stomach and esophagus abnormalities. He would need open-heart surgery a week later (if he was strong enough), and if he made it through that, he would need a couple more open-heart surgeries afterward. His heart could stop any day, and I wouldn’t be able to fly to the States to fix the problem because I simply didn’t live close enough. They explained the risks of the baby dying in utero.

 

We then saw two doctors from Genetics. They confirmed what I had heard earlier and added: our baby did not only have fatal heart (six to eight anomalies) and brain defects, and cleft lip and palate, but his stomach was also small, his esophagus was closed, he had asymmetrical ears and eyes, a two vessel cord… all which pointed to either a syndrome called CHARGE Syndrome, (but a real severe case of CHARGE Syndrome), or Goldenhar Syndrome. They were inclined to believe it was CHARGE, but gave me both possibilities. The baby was most likely deaf and blind as well. (After birth, we also learned that one of his hands was clenched and he had a slight abnormality on one of his feet. We are still waiting for the results of the genetics and pathology tests performed on him, including the results for CHARGE.  We were told that the test only shows positive for 2/3 of the babies with CHARGE, so it was possible it would come back negative too. There is no known test for Goldenhar Syndrome.)

 

We had the best counseling and nurses available. The staff was great. The doctors were understanding and simply amazing. Our families were there and extremely supportive. All I could do was imagine myself in that same place, giving birth to a healthy baby. Except I wasn’t. And my dream was not coming true this time either.

 

We did every test available–two amnios, the baby’s FISH, a karyotype, a microarray, and a karyotype for the parents. Everything came back normal, all his results read “normal male.” That’s when I got angry. I had so many questions no one could answer: Why is there something wrong if it clearly reads “normal”? Why did this happen to me? What are the chances of it happening again? Why can’t we fix him? Why isn’t there something wrong so we can fix it and carry on to have healthy breathing, living children? Was it the Clomid? Would I have miscarried if I did not have the progesterone shots? All they said was that it was “bad luck” and we had a two to three percent chance of it happening again. A doctor even dared tell me I should be more “cautious” during a next pregnancy. How much more cautious can one be? I had a Doppler at home, and had ultrasounds and appointments with my OB every other week. What else is there to do? (I had even adopted the habit of throwing out the first piece of toilet paper when using public restrooms, trying to avoid infections.)

 

After we confirmed the diagnosis, and got worse news than what we had gotten a week earlier (the baby had grown for another week and the results were much clearer), we made up our minds: we would in fact terminate the pregnancy. It was the best choice for us and for our baby. Now what the first doctor offered didn’t sound so horrible after all. This time around, it sounded like a relief.

 

We met with a Genetics counselor who provided all the information we needed and gave us the choice between a D&E and being induced, and explained the risks for both. I chose to be induced. She told us that since it was Thursday, I was going to have to wait until Monday because I was considered high risk and they wouldn’t do an induction over the weekend. I had to wait five more days; five long, long days of feeling our baby kick hard enough to keep me up at night.

 

During the weekend, I remembered that the counselor had talked about an injection that would stop the baby’s heart. I don’t know why I did not ask when it would happen at her office, but suddenly this was all I could think of. Not only was I choosing to take my baby’s life away, but I was choosing the exact time and date this was going to happen. And this thought danced in my head for the whole entire weekend. I Googled how this would happen and what the baby would feel.

 

Monday, September 29th came. I was 20w6d. As soon as we got to the hospital, I asked why the injection was necessary. The counselor told me it was hospital policy not to induce until they were sure that the baby’s heart wasn’t beating, and that the safest and gentlest way to do it was with the injection. They took me in the room for my second amnio, and explained that after the amnio was performed, they’d give the baby the injection with the same needle, avoiding having to do this separately and pinching me twice. (The injection would not be given directly to his heart, which was something that had also kept me up at night.)

 

When performing the ultrasound, they asked if I wanted the monitor turned off. I said no. I wanted to see my baby alive for the last time. I wanted to see him move for the last time. I had my mother read to him, as I had imagined her reading to him when he was born. (I brought the book in to read to him myself, but couldn’t do it then.)

 

The needle was in and it felt like they were sucking life out of me. The second amnio wasn’t as painful as the first one, but I started screaming anyway. I knew that once the amnio was done, the injection would follow. And I screamed louder and louder, and cried so hard. It was really happening: I was letting them kill our baby. I was killing my baby.

 

They gave me a pill to help stop the baby’s heart and I was sent home. I was to come back the following day, and labor would be induced then.

 

He moved around for a couple of hours after that. At 11:45 am I felt him kick for the last time. These were not the casual kicks I had been feeling for the past two weeks, these were I’m-having-a-heart-attack-kicks, desperate, strong kicks, and I could feel his pain as he kicked. I asked him to forgive me. And just like that, my heartbeat, the one I had forever been hoping to hear, stopped.

Tuesday, September 30th I was at the hospital at 9:00 am. I had an ultrasound to confirm the baby’s heart wasn’t beating. I knew it wasn’t. I then talked to different counselors and was told that the doctor had been called into surgery. The induction started at 1:00 pm.

They gave me vaginal pills at 1:00, 4:00, and 7:30 pm. The pain started. I couldn’t tell the contractions apart from the “cramping” they said I’d feel, as this was my first time in labor. I wasn’t sure if I needed the epidural or not and was not sure how much worse the pain was going to get. I am so thankful that my sister-in-law flew in, and since she had been through this herself, convinced me to get the epidural.

The anesthesiologists came with the epidural at 8:25 pm, and could only get it in after several attempts at 8:50 pm. I could feel everything on the left side of my body. My temperature rose significantly. I had a fever of 103.8. They drew my blood looking for signs of infection. They broke my water at 10:35 pm. They put ice packs all over my body, including in between my thighs, and lowered the room temperature.

I kept saying I felt a “stretching sensation down there”. I asked my husband to stay by my side because I felt something “coming out.” The nurses assured me it was normal. I asked that they change my ice packs since I felt I was on fire. When they came to change them, nurse J said: “Ok, that’s part of the baby right there.” I cried for the first time that day.

A was born at 11:35 pm. Perfect beyond his imperfections.

 

 

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