|Posted by Sherri Viner on March 21, 2015 at 2:00 AM|
I picked Jimmy up from work and headed to our appointment. The car ride was calm even though we were both full of nerves. We got Alexander set up in his stroller and we went up to the doctor’s office and checked in. It was around lunch time and because we had so much time before we were going to be called, we headed downstairs to the food court area which was between the offices we were at and the Children’s hospital on the other side. Jimmy waited in line and got some food from Smash Burger and everything was normal like we were just hanging out at a food court in the mall. In reality was it was the calm before the storm.
We went back upstairs and finally got ushered into exam room 1. There was a big screen above so we could watch the scan that was going to be taking place and a large ultrasound machine that filled the room. I started to get nervous and had to tell myself to breath slowly. The tech took forever in getting back from lunch and we sat in the room and waited. It probably wouldn't have been so bad except that Alexander had already been cooped up in his stroller for about an hour and now was stationary again. We were trying to ask an 18 month old to just sit and behave for close to another hour. Not so much, he started to freak out. It got so bad that not even our final resort friend, the infamous Ipad, could save the day. He was terrible, I've never seen him like this and I felt awful because I couldn't help Jimmy calm him since I was lying on the table getting the scan done. I should have known right then and there that Alexander’s behavior was a sign of things to come.
The Scan wasn't quite complete and the tech told me to stay lying down and that she was coming back with the doctor. At this point Alexander was so bad that Jimmy had to take him out of the room. The doctor came in and the tech scanned a few things and was discussing it with the doctor. They weren't talking about any issues, it was just the doctor asking to see different angles of things and asking the tech to put “colors” on images. The colors were just to the blue and red that showed the blood to and from the heart.Then it was over. I got the goo off me and they turned on the lights. The doctor sat down in front of me and asked if I would like someone to go get Jimmy. I thought it be best to just get the news while it was quiet as I just knew Alexander was still very upset.
The doctor started by saying “okay I’m not going to sugar coat it. Your son has very serious heart defects.” There it was, my worst fears were realized but since I did some research I had an idea of what may be ahead and I didn't feel completely lost. She then continued to tell me that they saw that his heart was in the correct position and pointed in the correct way but that his stomach presented on the right side of his body which wasn't normal. The doctor didn't go into the specifics of the defects because she said it was still difficult to see everything since the baby’s heart was the size of a pinky finger nail. She went on to say that we needed to come back to see the pediatric cardiologist. Apparently I scanned well enough to come back in a month versus having to wait 2 months. The cardiologist should be able to see the heart better in a month and give us more specific details as far as the defects.
I was still holding everything together until the doctor went on a webpage from a medical site and sited its mortality rate. Apparently she was driving home the fact that what we were facing was grim and that she didn't want to give us any false hopes. Message loud and clear, as soon I heard the survival rate was less than double digits I started to fall apart. I still didn't even know what the name of the disorder was. Everything she said after that point is a bit of a blur. I asked her if they could print me out the information from the websites we looked at together. I also asked through my tears if they could tell Jimmy because I knew I didn't have the knowledge or ability to relay what was just told to me.
We then all went into a conference room to wait for Jimmy. By this time, I had pulled myself together again and stopped crying but I was clearly upset. Jimmy came in with Alexander who was squirming around. So now it was my turn to take Alexander out of the room as he screamed while Jimmy got the news from the doctor. After a while, I went to check on them in the conference room and they were wrapping up. We both looked at each other, neither of us could believe what was happening.
The whole car ride home I was numb and I would have little bouts of tears. We talked about what we were thinking as I continued to read my printed out information. Heterotaxy, that’s what it was called. Neither of us had ever heard of it before. Nothing we read was good. We both thought we were prepared for the worst case scenario but we were thrown for a loop with what was now beyond our worst case. If it had only been the heart or only the stomach it would have been more manageable but since it was together we were dealing with something altogether more complicated.
As we pulled into the driveway, James was walking home from the bus stop. We told him it didn't look good for his brother but I knew he could already sense that the news was bad. The rest of the night just dragged on as we all were furiously trying to understand what Heterotaxy was. Each of us finding out new facts and sharing it with the other. The research process was difficult though. There isn't a lot of information out there and in reality each case is so different because of the varying severity of defects along with specific organ orientations. We had more questions than answers.
That night we went to lie down to go to sleep and that’s when everything just hit me. I think I held off as long as I could, but I started to weep uncontrollably. I cried so hard that I could hardly catch my breath. I kept thinking of the ultrasound and how his little heart, despite being broken, was beating away. This poor baby had no idea there was anything wrong with him. He has no idea the potential challenges he faces. I was so sad for our little boy. Jimmy stroked my head and rubbed my back gently to try to console me but it almost made it worse because I knew he was hurting too. So I continued to cry for both of us.
Categories: March 2015