Mariana

Posted on Posted in Fetal Hydrops, Induction/L&D, Stories, Trisomy 21 (Down syndrome)
It was almost like she came out in her bubble, protected from the outside world.

By Andrea

My husband and I were excited when we found out that I was pregnant. We have a three-year-old daughter and this baby would have been born around the same time our daughter started kindergarten. Everything happened as planned; it was a very expected pregnancy.

The first ultrasound was at 12 weeks. I wasn’t very concerned. It was probably because we didn’t have any problems during our first pregnancy and our daughter was born healthy. Even though my husband really wanted to be there, he couldn’t make it for that ultrasound. Maybe that wasn’t such a bad thing. I completely broke down when I heard the news. If he’d been there and started crying or something, I would have completely lost it. He tends to be the one who never cries, but I’m not so sure in this case.

The technician was friendly at the beginning. She said she was going to show me everything and take pictures. After starting the ultrasound she became quiet, then she left and came back with the radiologist.

When the radiologist introduced herself, I knew something was wrong. I asked her to tell me what it was. She said the baby had a cystic hygroma and hydrops fetalis. I have a medical background, so I knew what it was. She gave me all these possible causes like Turner syndrome, cardiovascular diseases, and she even said some babies could even end being Ok.

I left the office feeling sad and confused. I was relieved to have my friend waiting outside. It is funny how things happen: she was late, and just before starting the ultrasound I called and told her that she didn’t have to come, that it wasn’t a big deal. She insisted, and I’m glad she did.

I didn’t feel like I could go to work the next day, so I spent it researching. The more I read, the worst it got. The percentage of babies who made it seemed small and even if the baby didn’t die in the womb, there were many things that could be wrong which wouldn’t be noticeable until later.

It took a couple of days to get an appointment with a genetic counselor. My husband wasn’t back yet, but again maybe that wasn’t such a bad thing. The genetic counselor was accompanied by the geneticist. Both were very kind. I don’t remember a lot about this appointment, maybe because they gave me so much information I ended up exhausted. I still found it useful and at least I left with some options.

The first option was to wait, keep doing weekly ultrasounds for one month and then do an amniocentesis. The second option was chorionic villous sampling (CVS). The third was to terminate the pregnancy and then do an autopsy. I think this option was offered because all the clinicians agreed that the prognosis was very poor, there was a high probability of the baby passing away during the pregnancy or as a newborn.

There was still this very small chance of everything being Ok. You might think this is a good thing, but from my perspective, this made the decision process much more difficult. My husband and I decided that we were not comfortable with terminating the pregnancy only the information we had. The CVS sounded like the best option. It required to travel to another province but at least we wouldn’t have to wait.

I was glad my mom was with me during that trip. My mother-in -law stayed with our daughter which was comforting too. We waited four days for the preliminary results. My husband was finally able to make it back home before getting them.

They said somebody from the lab would call me with results. We had gone to the movies on a Tuesday evening to distract ourselves, and got the call after the movie started.  I ran outside to answer my phone. She said it was Down syndrome, and told us it was a girl.

I cried a lot, staying outside of the theatre for about half an hour. Finally, I returned to watch the movie because our daughter was excited about it and didn’t know anything.

We spent the next day discussing what to do. We found the diagnosis of Down syndrome very difficult because we were not sure we would end a pregnancy for that reason. Still, the clinicians insisted that the hydrops made the prognosis worse. We decided to terminate the pregnancy based on the baby’s poor prognosis and low survival rate with hydrops. However, every time I see a kid with Down syndrome or read something related, I feel guilty. I wonder if perhaps our daughter could have lived and if she might have been Ok.

I called the doctor to confirm our decision. He said they normally do a D&C at 14 weeks but for more advanced pregnancies they induce labor.  I couldn’t deal with a D&C because it meant I would leave the hospital with nothing. My doctor very kindly offered to look into an induction of labor for me. He was able to arrange it and I was thankful.

Two days later at the hospital, they inserted the first Cytotec pill at noon. It gave me chills and uncomfortable gastrointestinal symptoms. The first two doses didn’t do much, the third one, around 8:00 PM, gave me terrible cramps and a lot of pain. It felt like a long time but was only two hours before I felt the need to push. The baby came quickly, still in the amniotic sac which never broke.

There are no words to describe how much comfort that gave me, it was almost like she came out in her little bubble protected from the world outside. That was why we wanted to do an induced labor; at least we were able to give her that.

The placenta came out fairly quickly so they didn’t have to do a D&C. About half an hour later the nurse brought the baby. My husband, mom and I saw her. She was covered with a tiny blanket. I could still see what was wrong with her, but she was beautiful too with her tiny fingers and toes. I felt so much peace after seeing her. We looked at her for some time, took pictures and then the nurse took her away. We didn’t want them to do an autopsy and decided that the hospital could take care of her remains.

They gave us her blanket and a card with her birth information. We named her Mariana. She weighed 82 grams and measured 13 centimeters. We honoured her by making a teddy bear with her blanket, embroidered with her birth information. We are not very religious and didn’t feel there was much more we could do. I’m not sure I believe in heaven but I secretly hope that my grandpa who I loved so much will be taking care of Mariana in heaven.

I’m writing this just one day after Mariana left this world. We went back home and had a relatively relaxed day, but I awoke at 2:00 in the morning and couldn’t fall back to sleep. I felt the need to write this. I’m not sure why because I don’t even know if I want to show it to anyone. Then, I think maybe I can share it at the Ending a Wanted Pregnancy website where other parents share similar stories, and it might even help someone. I found the site helpful. It made me feel that maybe we were not so bad, that other people would make the same decision. It also helped us learn from other people’s experiences. Some of them had regrets and some didn’t.

I also wonder if I can share this with the people that I want to thank, especially because I have trouble talking about this. We were lucky to have people supporting us. They helped us in many different ways.

Our three-year-old daughter—even though she doesn’t know anything—has been so sweet lately. It’s almost like she senses we need more love than usual. She gave us a little push so we were able to go through all this. I look at her and think how lucky we are that she is here and healthy.

There is also a small group of people  I have been hiding from. They were really concerned and would have loved to help us in one way or another, but I haven’t discussed anything with them. I just couldn’t talk about it, I hope they understand.

 

 

CC0 public domain image courtesy of Alexas_Photos via Pixabay