In case you haven’t been following along and would like to read my story of infant loss from the beginning, you can begin with Finding Out There Is Something Wrong With My Baby. From there, you can navigate to the next post. For those of you who have been following along, I suppose the next step that I had to experience was a return visit to the Perinatologist, for an amniocentesis.
As I previously said, the Perinatologist’s office contained 4 or 5 doctors that I had to rotate between. Up to this point, I had only met one of the doctors who was great, in spite of the horrible circumstance we were meeting under. My second visit was with a woman whom had no children, and seemed to have no compassion or bedside manners at all. I’m sorry, but I believe there are certain fields where bedside manner is very key, and should be a requirement for such job positions. Having knowledge is great, but knowledge alone, without the manner to deliver that knowledge, can be dangerous. You will begin to see why I say this.
I don’t recall if my husband or my mom went with me to this appointment, but I don’t think I was alone. I think I learned my lesson from the previous visit. The main goal of this appointment was to have an amniocentesis done, so we could see if my baby girl had any chromosome abnormalities. The amniocentesis can be dangerous and is not recommended for every pregnancy. Using an ultrasound, a very fine, but very long needle is guided through the abdomen and into the amniotic sac. This is dangerous because about every 1 in 150 amniocentesises done, the pregnancy could result in miscarriage. If the baby gets very active, that could be scary too. With the needle, some of the amniotic fluid is removed, so it can be tested. The process was not too terrible, but wasn’t exactly a walk in the park either. More than pain or anything else, I think I was just very scared. Scared of the miscarriage, scared of pain and scared of the results. According to the doctors, we needed to find out if there were chromosome abnormalities so we would know how to proceed. This was my first truly high risk pregnancy (aside from having twins), so I followed their orders.
Before having the amniocentesis, my doctor talked with me about what to expect. She said the main things that they would be looking for in the results is a chromosome abnormality with autosome pair 21, which indicates Down Syndrome, or with pairs 13 or 18. Trisomy 13 or 18, which are similar to one another is where the baby has three copies of genetic material from chromosome 13 or 18, instead of the usual two copies. Because of some of the deformities that the prior ultrasound indicated, the doctors were leaning toward my baby girl having Trisomy 13 or 18. Down Syndrome was still a possibility, but I didn’t quite fit the norm.
Having never heard of Trisomy 13 or 18 before, here is how my doctor explained it to me. She said that it would mean my baby has no chance of living. Sure, she could be born alive, but she wouldn’t have much of a life, and she wouldn’t live long. If the amniocentesis indicates that my baby was a Trisomy baby, then I should just cut my losses and terminate the pregnancy.
WOW – can you believe that? Without even knowing what is really wrong with my baby yet, how do you tell a pregnant, concerned, emotional mother this, and in this way? Basically, she was telling me that if my baby was not going to be perfect, then I should terminate! The other thing is that so many times, ultrasounds are wrong, and babies are better than doctors think. This made me research all about medical malpractice.
On the bright side, if my baby was not a Trisomy baby, then it would be full-court press. They would do all they could to keep my baby alive. Without even having any results, I felt like this was so much to process. Sometimes there is hard information that one has to deliver, but it’s all in the delivery. My doctor was very cold and clinical and didn’t appear to have a heart. I realize that may be harsh, but that is how I felt in that moment, and I think I still do.
You can read about how the rest of this day went, when I went home and was Held up in Bed full of Tears and Grief.