I've heard this twice in the last week:
"I don't know why I need prenatal testing, I won't terminate no matter what is wrong with the baby."
It's a wonderful sentiment, that those people would love a baby no matter what. It's what we would all like to believe we are capable of. Unfortunately that sentiment is born of ignorance and naiveté. Those people don't really understand what "no matter what" means. I'm not saying this to be harsh or to criticize. I really hope the vast majority of people never find out what that means. I just need to say how much it hurts to hear that, and how much I would give to have that kind of ignorance.
Four days from now marks the anniversary of the conception of my only son. The son we wanted badly and tried so hard to get. The son that we had to let go. Some people may think we are horrible people for deciding to end a pregnancy. Some people think that we were playing God. Some people are kinder and just think that while they don't condemn us for our decision, they would never make the same one.
I've been meaning for awhile to record all of Aiden's story here and now is a good time. The discussion of prenatal testing and termination are so much a part of his story that it feels right to talk about both at the same time.
One year ago I was on my first round of Clomid after trying for 18 months to get pregnant again. I had developed a luteal phase defect on top of all my other problems so I asked my OB/GYN for help. We couldn't afford an RE so it was just a case of trying the Clomid and see if it worked. It did. Seven days after I ovulated I started bleeding. I cried myself to sleep thinking that my period had started too early again and I wasn't going to get pregnant. The next day the bleeding stopped and didn't start again. Five days later I felt weird and took a pregnancy test. It was positive. I was over the moon. This was so easy! We were going to get our second child and then we were done. No more trying desperately to get pregnant, no more miserable pregnancies. One more beautiful baby to cuddle and love.
My OB tested my HCG levels because there was a decent risk of an ectopic. The numbers did not double in 48 hours. I spent the next few days panicking. I was sure I was having a miscarriage. My OB put me on progesterone to try to help the pregnancy. At 7 weeks we had an ultrasound and everything looked fine. The baby was measuring a little small but the doctor never mentioned that to me. I found out later. So I was happy again. The pregnancy wasn't nearly as hard as my first had been. I was pretty nauseous but doing okay with work. I had planned to get the early prenatal testing done but time slipped away from me and it was too late, so I decided to just wait for the quad screen. The heartbeat was fine, I assumed the baby was okay. If felt like time was flying. Before I knew it I was feeling the baby moving, starting to show, and getting really excited about the 20 week ultrasound. I had waited until after I was "miscarriage safe" and not told anyone until after 12 weeks (wow - was I naive). I told everyone at work when my ultrasound was. We read "I'm a big sister" to my daughter every night. I even thought about taking my daughter with me to the ultrasound (thank GOD I changed my mind).
Friday, December 18th. My husband and I took the whole day off. We went out to lunch to celebrate the new baby and my new job. We meandered through a cute baby store and almost bought a bunch of big sister stuff for our 3 year old. We waltzed into the OB's office so happy and self-assured. I had planned just right. My bladder was full but not too full so I wasn't squirmy and miserable. The tech smeared the goo and went to work.
The very first thing I saw was the very large black circles on the top of the baby's head. I knew that meant fluid. In a weird moment of absolute denial, I said nothing to the tech or my husband. We talked about how different this one was. It was behaving and not jumping all over the place, making measurements hard. The tech was pretty quiet. I didn't notice. She asked if we wanted to know the sex and we said yes. She found the genitals and labeled them "boy stuff", it made us laugh. She left the room for a few minutes to see if the doctor wanted a look. I still wasn't alarmed.
She said we could go to the waiting room and the doctor would call us back. We laughed and talked quietly about how strange it would be to have a boy. I asked my husband if he thought his brother, who had lost his twin boys at 8 months, would be upset. We talked about names and wondered if Kira would be upset about not getting a sister.
The nurse called us back. The doctor sat down in front of me and said, point blank: "There are several things about the baby that concern me."
I remember my eyes filing with tears. I tried to listen but the list was so LONG, I just tuned it out after a while. I kept thinking, "did I do this?" I thought about the early signs, that we should have miscarried. I questioned why he was still alive. I thought I should have told Sean about the fluid, than he wouldn't have been so shocked. I thought I deserved this. This was the disaster I was expecting.
My doctor made it clear from the beginning that the prognosis was very poor. She refused to predict if he would live or not, or really explain what she meant by very poor. But it was pretty obvious what she thought. She said it looked like a trisomy - probably 18. She said trisomy 18 is universally fatal in boys. She told us that the hospital here, even though it is catholic, would permit an early induction (before the age of viability) if the fetal anomalies were incompatible with life. Apparently there is an ethics committee that okay's these things. She referred us to the maternal fetal specialist for an amnio. This happened on a Friday at 4pm. The earliest they could get us in was Tuesday.
I don't remember what we did the next 4 days. We didn't go back to work. We called our family and friends and told them something was terribly wrong. We cried a lot. We talked about what we would do. I researched trisomy 18 and tried to decide whether to carry to term or not.
Tuesday came and we went to our appointment. When the doctor came in he introduced himself and then just stared at us. I was a little disconcerted but so stressed out that I didn't give it much thought. I told him that we knew it was bad and that we wanted to know if he thought the defects were incompatible with life. We wanted to know if the brain defects were causing him pain and if it looked like his heart would make it through a full term pregnancy. He didn't really respond, just told us that he had to take a look first. He did a high level ultrasound that included an echo cardiogram. He didn't really talk to us the whole time. They couldn't get a look at the baby's feet because he wasn't really moving his legs. What I had thought were kicks were actually the baby arching his back and throwing out his arms. It looked like his legs were paralyzed. On the higher resolution I could clearly see the cleft lip and palette, the clenched hands, and the water on the brain. I cried the whole time.
The doctor finished and left to put his notes together. He came back in to do the amnio which was quick and painful and then talked to us. He also said the prognosis was very poor. But that was ALL he said. When we asked if he thought the ethics committee would allow induction he was very emphatic that they would not. He avoided all of my specific questions about the baby's brain and heart. He told me the brain defects were mild and would not cause the baby any pain. He also assumed the baby had trisomy 18. He referred us to a patient's blog, saying that his parents "celebrated his life" when I asked what happened to their baby. When I asked "what do we do now" he said, "just wait". The bastard didn't even have the guts to tell me that this was a fatal condition. He brushed off or ignored every question we had, and I got the impression it was because he was totally against the idea of interrupting the pregnancy.
I have to stop here, next time I will get into the amnio results and what happened after that.