I went to lunch before this appointment with my two crazy kids, my mom and her best friend from waaaaaay back when. Her friend was in town for a few hours after visiting other friends before their flight took off so it was a nice treat to see her as well. We went to one of my favorite places to go eat back in our old neighborhood. It’s a Greek place that is both kid friendly and has excellent food and was also close to where my appointment would be. I hadn’t had much of an appetite but I gobbled up the Greek salad I got in about 2 seconds flat. After we ate I handed my kids off to my mom so that I could go to this ultrasound and really focus on what was going on. I met Chad at the Maternal Fetal doc. for the appointment. They brought us back quickly and got started. Of course it was the same deal. The ultrasound tech did the scan and then rather than waiting for a call the doc. came in after the scan to go over what they were looking at and the images of concern. The ultrasound tech was nice enough but didn’t tell us anything. The doc. finally came in. There was no sugar coating this topic…”So how are you feeling?”, he asked. “I’m scared of what you’re going to tell us.”, I replied. He proceeded, “Well, this baby definitely has a cleft lip and the palate looks like it goes pretty far back too.” As if my heart couldn’t sink any further, it did. He asked what I knew about clefts and how I felt about having a baby with a cleft. I could only tell him that I would be lying if I said I was excited about it and that I was actually terrified of seeing my child for the first time. He told me that was a completely normal response to news like this and then went onto explain that this is fixable and that technology and surgeons these days do an amazing job with all this. He reassured us that clefts in and of themselves are nothing to be concerned with and that he even had a roommate in college who had a cleft lip and palate and he went on to be a doctor. Oh GREAT these kids are “just like everyone else” and can hold jobs and get degrees. Whatever. It still didn’t help. But then it got much much worse. The doc. was saving the best news for last. “Now something else to mention with this baby that could be cause for concern is that there’s a white spot on the baby’s heart called an echogenic intracardia focus. When in isolation this isn’t a big deal and up to 30% of asian baby’s have this white spot but in conjunction with another anomaly, and in this baby’s case the cleft, could mean that this baby has a syndrome, most likely Trisomy 13 (Patau syndrome), 18 (Edwards syndrome or 21 (downs syndrome).” Never in my wildest dreams could I have prepared myself for this type of news. My mouth dried up, I felt a panic come over my body that I have never experienced before and I felt like hyperventilating. I really didn’t think it could get worse than the cleft and now the cleft seemed so insignificant and I would have taken “just a cleft” over anything. I felt angry at myself for even being upset over such a silly little defect. Now I just wanted my baby to survive longer than an hour outside of the womb. And the best case scenario out of those 3 syndromes would be downs syndrome in which case my baby would have developmental disabilities for the rest of its life. Trisomy 13 and 18 are fatal syndromes and best case scenario for those syndromes is that the baby could live for up to a year with the help of technology and that’s just no way to live. I didn’t know what to say or where to even begin to process this information.
The doc. knew that this was a lot of information to take in and could see the panic set in. I asked where we were supposed to go next with this information. He recommended we get an amniocentesis to rule these syndromes and others out that are associated with clefts. I had very little knowledge of amniocentesis but I did know that it didn’t come without risks. The doc. explained that the biggest risk would be miscarriage and that about 1 in 500/600 pregnancies miscarry due to this procedure. He also went onto explain that maybe those pregnancies that ended in miscarriage due to this procedure would have ended anyways because only high risk populations get amnio. to begin with. At this point odds didn’t really mean much to us considering that 1 in 700 kids have a cleft in the first place. So basically if you had told me I had a 1 in 700 chance of having a kid with a cleft I would have laughed and said, “Thanks, I’ll take my chances”. Odds? What are odds? All I heard were the risks. And as I was thinking about the odds in my head about conceiving a baby with a cleft, all I could think about were that my odds of miscarrying during or after an amnio. were even higher than having a baby with a cleft! We were totally blind-sided. He told us we didn’t have to make a decision right away but that it probably needed to happen in the next week or so if we were going to have it done. I was in shock. I didn’t want to have to face what could be. What if the baby had a syndrome? Would we terminate? Would we keep it anyways? How could we possibly be able to deal with this? How would our other children be able to deal with this? There were so many questions that no one but my husband and I could answer. We just sat there, both of us with looks like deers in headlights. So many thoughts and yet my brain felt completely empty all at the same time.
At the end of the appointment Chad asked me if I wanted to know the gender of the baby. We had decided prior to the appointment that we wanted to know the gender if the baby actually had a cleft because we couldn’t bare the thought of calling the baby an “it” with the defect. So we decided we wanted to know before leaving. The baby wasn’t cooperating but we got a decent shot of the parts and the amnio would later confirm, it was a girl. My heart both filled with excitement and sank. I knew it was a girl. I didn’t need confirmation. I wanted it to be a boy once we found out the baby had a cleft because I didn’t want a girl to have a scar on her face. But I wanted another girl so badly so the news was a mixed bag of emotions, just like everything else that day had been.
We left the appointment completely overwhelmed and in shock. As soon as we got in the car to drive home I knew we had to get the amnio. There was no doubt in my mind. We couldn’t go through the next 22 weeks not knowing what was wrong with this baby. I also decided that no matter what the results would be, there was no way I was going to terminate the pregnancy. I’m pro choice and definitely would have thought I would have terminated a baby who had no chance of life in the outside world prior to being faced with this situation but when faced with this it was a completely different reaction than I had anticipated. I just couldn’t bare the thought of never meeting my child. I didn’t want to have to be the one who made that decision. I honestly wanted the amnio to make that decision for us. I figured that if I miscarried because of the amnion then the pregnancy was probably doomed to begin with and that the amnio may just help speed things up. But I also wanted to give her a chance. On the other hand I also felt it was so selfish of me to bring a baby into this world who had a very slim chance of surviving longer than a few hours. I didn’t want a life like that for my child and also knew that a life on tubes and in a hospital is no life at all and would be for me and only me, not my baby. It was all just so horrible. Of course there was also the chance that nothing was actually wrong with this baby, with the exception of the cleft defect. If that were the case then she could go on to have a completely normal life and be just like any other kid. But my mind doesn’t usually skip to that happy place first. I think of the worst case scenario and only grow more positively from there. This doesn’t work for everyone, especially my husband, but it works well for me.
Before even leaving the parking lot I texted the doctor to find out the earliest I could go ahead and get the amnio. His reply felt like it took hours. In the mean time Chad and I drove home both in silence and in question. I couldn’t even cry. I felt so numb. Now this wasn’t just about a dumb stupid little defect on her lip, this was a potential end to my pregnancy and the end of even having a 3rd child or worse, having a 3rd child and then watching her die soon after meeting her. When the doc. finally got back to me he told me I could get the amnio the following afternoon at 1pm. I wanted to have it done sooner than that but if that was the earliest I told him I would take it. The next 24 hours were absolute torture. My mom and a very good friend of hers were at my house when we got home because they were watching the other kids for us. That was the first time I had cried. I saw my mom and just lost it. I could barely speak. I couldn’t even believe this was happening to us.
I process things by talking them out until I’m blue in the face and then I talk some more. I research, I google, I talk to others in similar situations, I find support groups on social media. Some people shut down but I am the opposite of that. I need people. So I sat on my porch swing with my mom and her friend and cried and cried and cried and talked and cried some more. I was so scared. I had never felt this feeling of scared before. This was an entirely different level of scared that I somehow didn’t think I could live through. For the next 4 hours I sat and talked and cried. I couldn’t be left alone with my thoughts. I was scared of the amnio. because I was scared of losing my baby girl in the next few days. I was scared of the results of the amnio because what if it was bad news? For the first time in my life I realized that I’m NO one special and that NOBODY is exempt from bad things happening to them in life. We are all equal in this game called life and shit happens. I started seeing everything and everyone around me differently. Why would we be spared? Why wouldn’t I have a baby with something wrong with her? We took a chance and possibly lost or did we win because this baby would change us all for the rest of our lives no matter what the outcome was? There were just so many unanswered questions. I just wanted time to speed up and I wanted to know the outcome already. Anyone waiting for a surgery, procedure or test results knows how slowly time seems to pass during the waiting period. Time basically stopped for me the day of my level II ultrasound.
That night I stayed up way too late researching and crying with everything I found. No amount of research was going to change the fate of this baby. I knew that whatever was wrong with her had been there since the start. We were just unfortunately going to find out later than I would have liked. I started getting mad at my body wondering why in the world it had held onto a baby that could have a fatal syndrome and why I didn’t miscarry in those first 12 weeks. But then I would remind myself that I had the second trimester sequential blood draw and it was negative so how could this baby have anything chromosomal abnormalities? And what the hell was the point of that blood draw anyways if it were wrong or gave me a false negative!? I also reminded myself that I had been and was so so so sick and that this pregnancy felt identical to my pregnancy with Cam so how could this be a sick baby? Things just weren’t adding up. But then I would do more research and it seemed that anywhere I looked that the odds of having a baby with a cleft and an echogenic focus weren’t good and that the baby would most likely have an abnormality of some sort. The more I read the more I cried and the more sleep I lost. I didn’t eat for 24 hours. I was so stressed. And on top of all that could be wrong with my baby I still had to go in for the amnio which could ultimately end it all. It was so much. Let’s also not forget that I was taking Anatomy and Physiology and was losing a lot of study time. I had told myself that if there was something wrong with this baby that I would stop the course but I also felt as though life had to go on and that I couldn’t give up my dream just because of a bad pregnancy. I wanted distractions in my life and I finally decided that it was in my best interest to continue the course even if I failed it because I needed something to take my mind off of all of this. But, I gave myself permission to do nothing with the course over the weekend after my amnio if I couldn’t handle it.
By about 2am I finally decided I needed to try to go to sleep and somehow manage to fall asleep. I was scared to fall asleep because I knew that the morning would mean that I had to face the amnio.