We had the amnio on Dec 22, two days before everyone would be closed for FOUR FUCKING DAYS for the Christmas weekend. There was a slight chance we could get the initial results back before the holiday, but absolutely none that we would get the full results back. The wait was agonizing. We were so sure we were dealing with trisomy 18 that when we got the initial results back on Dec. 23rd we were in shock. They tested for trisomy 18, 21, and 13. They all came back normal. The genetics counselor was the one to tell us this. Thank god, we didn't have to talk to the asshole doctor again. She told us that they still thought it was a trisomy, just that it might be mosaic (not present in all cells). She was careful to emphasize that the outlook was bleak no matter what the results were, given the severity of the baby's defects. She was the one to tell us what the actual defects were. She answered the questions that the doctor wouldn't. I asked her about the ethics committee and although she also didn't think they would okay an induction, she was much more sympathetic.
I don't remember exactly when we decided on a name. Neither of us wanted our baby to die without a name. We had been waiting to find out the sex before looking for one, so we didn't even have a list. Sean and I both spent hours combing through baby names, trying to find something meaningful that we would both like. Nothing struck us. Sean asked if there was any name I liked and I said there was but it wasn't one I would have used for a living child. Both of us are against really popular names and the name I liked was VERY popular. I told him what it was and he didn't hate it. A couple of days went by and I couldn't find anything better so we decided to call our baby Aiden. It seems important to use his name for the rest of this story.
Usually a full chromosomal analysis from an amnio takes 7 to 10 days. They have to culture the cells to get enough to run the tests. The genetics counselor warned us that we might not get the results before the New Year's holiday. The exact sequence of events is all jumbled now but I remember frantically searching for a humane way to end the pregnancy. I DID NOT want to give up my son, but we were convinced that he would suffer, if he wasn't already. I asked the genetics counselor and my OB what we could do. Without the hospitals cooperation, our only option was an abortion clinic in a large city 6 hours away. I called the one I was told about and asked about the procedure. At 20 weeks they do what is called a D&E. (If you've had one - please skip this part, you don't need to read it) I can't go into the detail here, you can look it up if you want, but the description was horrid. I was sobbing and barely understandable when I asked if they anesthetize the baby first. She said they give an injection to stop the heart before they do anything else. While that was reassuring, the knowledge that I couldn't see or hold my son, that he wouldn't be intact, was more than I could take. I also couldn't imagine walking into a waiting room filled with perfectly healthy babies that just weren't wanted. I've always been pro-choice but that was just too much to ask of my right then. My heart was being ripped from my chest by slow degrees and it felt like the medical community was just twisting the knife. I thought about carrying to term, although the thought of walking around for months visibly pregnant with a dying fetus was pretty horrible too. I called the genetics counselor back and she gave me some advice that I will be forever grateful for. She told me to call another fetal specialist in town, one who might have other "options". I asked my OB about him and she agreed to talk to him on my behalf. Later that day, a Monday, his nurse called me and told me that we had another option.
She told me that the doctor does reductions in the case of high order multiples. She told me that he was willing to do the same procedure for us if we paid cash and didn't tell anyone. That way, we could show up at the hospital with an already dead baby and they would treat us like any other grieving parents, instead of criminals trying to murder their baby. I got off the phone with her and WAILED. I can't even call that crying. It was the most soul wrenching, painful moment of my life. In that moment I really accepted that our son was going to die, no matter what I did. The only difference between then and later was how much Aiden would suffer. The really horrible part was that the doctor was going on vacation right after the New Year. The only time we could see him was December 30th. We would have to make the decision that day because by the time he got back it would be illegal to perform the procedure because I would be past 24 weeks. We had exactly two days to decide the single most important thing of our lives. I still wasn't completely convinced that termination was the best choice. I just did not know what to do. Even though the outcome wouldn't have changed his prognosis, I wanted to have the amnio results before I had to decide. I just needed an answer, some type of reason. I was on the phone with the genetics counselor daily. We finally got the results the morning before the consultation with the new doctor. Aiden had an extremely rare deletion of the 2nd chromosome. I've only found two living people with it. One is an adult male that has to be restrained constantly or he hurts himself, the other is a little girl that leads a fairly normal life, although she has severe delays. Neither of them had any of the defects that Aiden had.
We took this information with us to the new doctor. We had researched as much as we could in the few hours before. My sister, a medical resident, had flown in the night before to help me. She went with us to our appointment to help ask questions and give support. The doctor was a MUCH nicer, much more sympathetic person than the first one. He talked to us like we were human beings and answered all our questions. He did the same scan the first doctor had done and told us what no one had bothered to until then. Aiden's defects were very severe*, there was an extremely small chance he would live, but he would be a vegetable. The clenched hands and lack of leg movement indicated severe neurological damage. However, if he was born and his heart was stable, we would have had NO CHOICE but to hand him over for surgery to close the spina bifida and put in a feeding tube. The doctor told us that if we refused those treatments, that social services would remove Aiden from us and a judge would order it done anyway. There was not a great chance of him surviving surgeries, assuming he lived that long. So we were faced with multiple surgeries on a vegetative child, immediately after birth. We would probably never take him home, and he would never talk, walk, smile, eat on his own, and would probably be deaf and blind. I couldn't imagine the horror of having enough awareness to register hideous pain but not be able to see, hear, or communicate in any way. When he told us that, the decision was made. I wanted more than anything to hold by poor baby and tell him I loved him while he was still alive. But in the end, my reasons for wanting to carry him longer were all selfish. I wanted him with me. I wanted to smell him and and feel his skin and sing to him, just once. But I had to let him go. I had to. He was so small, so defenseless, so dependent on me to make the best decision for him. It was the hardest thing I have ever had to do when I told that doctor to do the procedure. Part of me died right then and there. One thing that I resented, and still do, is that I was the only one who could make this decision. My husband thought it was the right thing to do but would go along with whatever I could live with. Ultimately, it was all up to me. It was a crushing burden and I've never felt so alone.
After I was prepped and we said our goodbyes the doctor injected a numbing agent into my belly. It hurt more than anything had so far. My husband was holding one hand and my sister the other. We were all sobbing. I wanted to watch but couldn't bring myself to. I knew if I saw Aiden flinch I would freak. The doctor used a needle like the amnio needle to inject potassium chloride into his heart. It seemed to take forever. I imagined him moving the needle around, trying to get it placed exactly right, while Aiden moved around, completely unaware he was about to die. My sister watched the monitor and I still want to ask her if the doctor got the right spot on the first try. I can't stand the thought that Aiden hurt for more than a second so I haven't been brave enough to ask. It was over so quick. One long, painful stick, some valium, and a dead baby. I was pretty numb. I know I went home and somehow interacted with my daughter, I don't know how. We had decided to wait until the following morning (Thursday) to go to my OB's office and from there to the hospital to be induced. That way we would be sure of having my OB on call. So that was our last night with both our children in the same house. One alive, and one dead.
I can't believe how long this is getting. I think I can finish in one more post, I have to stop before I get a migraine. In a way the next post will be the easiest one to write, as I've done it before. At this point all the agony was past and we had only to say our final goodbyes. One more physical trauma to get through.
*I did this elsewhere but I wanted it connected to this post. Here is the most complete list of Aiden's defects, taken from the records I have:
-Hydrocephalus (water on the brain) in both lateral ventricles and the third ventricle
-type II Arnold Chiari malformation (brain sits too low and is squeezed into the spinal chord - this is an extremely painful condition that the first doctor did not tell me about even though I specifically asked)
-agenesis of the corpus collosum (the structure separating the hemispheres of the brain is missing)
-meningomyelocele in the lower spine (spina bifida - the spinal chord is outside the body)
-ventral septal defect, atrial septal defect, and ventricular hypertrophy (heart defects, caused by the failure of the neural tube to close in early development)
-bilateral (both sides) cleft lip and palate.
-none of the three ultrasounds found a stomach bubble. Most likely there was no stomach or the trachea did not reach the stomach.
-too much amniotic fluid
-severe growth restriction
-rocker bottom feet (his feet looked perfect after he was born but his legs were deformed)