I have not been great about keeping this blog up. I may try to go back and add milestones from earlier, however, now I need a place to keep friends and family informed about what is going on with our Caribou.
Last Wednesday I went in for our 5th ultrasound. The first two were done because Caribou needed help by the infertility specialist to be conceived (Clomid, Estrogen, Progesterone). The third was done by my regular OB to rule out the possibility of a repeat Molar Pregnancy that we had last summer. Then we had to go to the high risk doctor because when applying for additional life insurance after our son was born, they discovered I have Sjogrens Syndrome which carries a 1% risk of my immune system attacking our baby's heart. If caught early enough, they can give me steroids and stop the process.
The ultrasound tech did her 40min scan and then told me that everything looked great and that she was going to get the doctor to look things over (as they did for the 4th scan). Then the US tech came back in because she said the doctor wanted her to try again to get a better picture of the babies face. Caribou is already head down and in my pelvis, so they were having a hard time getting a good picture since my hip bone was in the way. The doctor ended up coming in and trying as well. I assumed this was just so they could check off all of their readings. She asked if I had had the first trimester screenings done and I told her no, because no matter what, we will not terminate the pregnancy. I asked the doctor why they needed to do full body scans when I was only there to look for issues with the heart. She began to talk about how unlike regular ultrasounds who look for "hard signs" of issues, they also look for "soft signs". She then showed me the baby's brain and showed me some cysts. She said that the cysts were not harmful and would resolve themselves. Then she blindsided me by asking if I had heard of Trisomy 18. I knew that Trisomy 21 was downs syndrome and then I realized what was really going on here. She said another sign of Chromosomal defects are that the babies nose bone is not developing as fast as it should, so that is why she was trying to see Caribous face. She even tried to look at the other ultrasound pictures I had with me and was unable to find one (this could have been due to a bad picture though). She did feel that my 12 week scan looked like the baby had a thick Nuchal fold which is also a "soft" sign for Chromosomal issues. She suggested we get the Quad screen (a blood test) done as well as an Amnio. I told her again that we would not terminate the pregnancy even if there is an issue. She told me that the outcome for a baby with Trisomy 18 is not good. 50% will not make it to birth. Those that do usually live a few days. Rarely some will live past 1 year. They will also have severe health and mental issues. I again told her we will keep the baby.
I agreed to the Quad screen and so began our current week of waiting, praying and crying.
I am angry because I denied the screening for a reason in the first place, because we were not going to abort for any reason and I didn't want to worry about it in the mean time.
I am angry because when I told her we would not abort, she looked at me like I was just being emotional and I would come to my senses and realize that termination was the best option. I am angry because I read that 95% of people with this diagnosis do abort. As I write this I can feel Caribou kicking inside of me. Why would someone want to feel that even one day shorter than they have to? Are they all pressured like I feel I have been?
The Quad screen results will not give us a diagnosis. Just if we have a less than 1% chance of having a baby with the disorder or some number higher than that. We still plan to deny the Amnio because there is a .5-.25% chance of miscarriage and we don't plan to do anything different with either outcome. I also don't want more pressure to abort the child.
Even with a good Quad test, we will still worry. They only detect about 60% of babies with the issue. We will not know for sure until the baby is born at the end of March (or sooner). Please pray!
We have an appointment on Thursday with the genetic counselor to get the results, although I have asked that they try to get us in sooner if the results come back sooner.
The next step is another ultrasound on Nov 28th. They will also send me to a pediatric cardiologist for a heart scan. 85-90% of T18 babies have heart problems. She could not see any on her scan, but it sounds like they are better trained for finding issues. I am still waiting on a appointment from them however.
I also have a regular OB apt. next week. I am hoping she is more pro-life and less pushy about termination.