This was the day we had been looking forward to for many weeks. We were having the big ultrasound and would be finding out if the baby was a boy or a girl. C was visiting him mom in Houston, so we flew him in for the big day. We took two cars to the doctor’s office because the plan was after the ultrasound, C and I would go and get cupcakes, mess around and then head back to the airport. Steve, unfortunately had a meeting he needed to get to that afternoon. We waited anxiously for a little while, with C still saying he wanted a brother. Then it was our turn. The doctor came in and told us again that the blood work done at 13 weeks looked good. Today they would be looking at the anatomy and hopefully be able to tell us the gender for sure. We were excited. Christopher sat beside me and Steve was standing next to him. The doctor started off looking at her brain and said there was a little fluid there, but it looked good. He moved to the sweet little face and said it all looked good. Then he moved down to the heart. He was able to enlarge it so we could see it beating. It was an amazing sight. It had all 4 chambers and looked good. He turned the sound on so we could hear the heart beating. It was as usually 152 beats a minute. Then he moved on down to her abdomen. Again the baby was measuring small. He did say the weight was about 5 ounces. He confirmed that it was a girl and I was beyond excited. We could see her little hands folded over her body and moving up and down. The doctor moved down to her beautiful little feet. The were perfect and just adorable. The doctor commented on her being an actively one. You could see her feet moving all around. Then he went back to her hands. I should have been concerned but I wasn’t. He wanted to see them open and shut, but he couldn’t get an image of that. He finished and said those fateful words “I am a little concerned because she is measuring small and her fingers appear to be overlapping. There is a possibility of trisomy 18 and I would suggest that we do an amnio today to rule it out.” That was my biggest fear. I just wanted to leave with my latest ultrasound photo and start shopping. C went out to the lobby and waited while the doctor completed the amnio. He said we would have the initial results back in 48 hours.
We left the office and in a state of shock. I found the nearest bathroom and the tears began to flow. I pulled myself together, washed my face and went to find my boys. We did manage to get C a cupcake for the road. While we waited, Steve said he would take C to the airport and that I could head home. I was so glad her offered because I wasn’t sure I could hold it together all afternoon and didn’t want to C to see me upset. When I got in my car, I wanted to call my mom, but I was afraid to drive and cry so I waited the 40 minutes until I got home. Angie, my best friend called as I was entering the house. I told her it was a girl and then started crying. She cried as I told her the news and then reassured me that everything would be fine. I called my mom and she and I cried on the phone. I asked if she could call my dad. Then I started researching on the internet. It can be an evil thing. I was trying to look up all other possibilities for her hands overlapping. Anything where I would get to bring her home and raise her. Steve made it home and some how we managed to go out to dinner. We talked a little, but somehow I knew that the news wasn’t going to be good.
The next 48 hours were the longest of my life. Thursday, I couldn’t move. I was basically comatose on the couch. My mom and dad both called to check on me. Angie called to see if I wanted to go to lunch on Friday. I thought it would be a nice distraction. Both Wednesday and Thursday very little sleep was gotten by Steve and myself. On Friday, I did wake up feeling at peace with everything. I made it through lunch with Angie, but on the way home I suddenly got nervous about the phone call. I watched mindless television waiting. Dr. W, called around 1. He started explaining the results. I only heard a portion of what he said. The words incompatible with life kept ringing in my head. He said that Dr. M would be able to help us go through our possible choices and that if she couldn’t help us with termination, he could. I thanked him and immediately called Steve. I told him what the doctor had said about 3 chromosomes and he immediately started googling it. Unfortunately in my not hearing all of it, I didn’t get the full information. Steve tried calling back, but the office was closed. He had the doctor paged and over a week later we are still waiting for a call back. In the meantime, my obgyn’s office was notified of the results and Laurie the sweet nurse called to tell me how sorry she was and to set up a time to meet with Dr. M. Phone calls were made to my parents and my best friend. Lots of tears were shed. When we began with the high risk testing, it was to assure us that the baby would be fine and determine if the possibility of down’s syndrome existed. We just wanted to have all the information so we could be ready to bring our child home. We never imagined it would end this way. I am sure most parents on this same journey feel this way.
Christopher had spent the last few days worrying. He was calling and checking on me each evening. On Friday, Steve told him that the baby would not live. He cried. That broke my heart, but at the same time made us feel good. He had been such a teenager about the baby and admittedly was not happy about us having a crying baby around the house. Seeing him get upset, told us that he might have been okay with the whole baby thing after all. Knowing he was upset and he wasn’t with us to be comforted was hard though. It would have been nice to have him home so we could all grieve together.
We spent the weekend assuming it was trisomy 18. It wasn’t until we met with Dr. M on Monday that we learned it was triploidy. It is a rare lethal chromosome abnormality. Our daughter has 69 chromosomes, rather than 46. You can read more about it here. Basically, it is a miracle that she has made it this far. We don’t know how long she will live. There is a strong possibility that she will pass away in utero. If she is born alive, she may only live for a couple of hours. The doctors we had been in contact with did recommend that we terminate the pregnancy. In fact, that is where I was leaning. I’m being honest here incase other families going through this stumble upon my blog. I didn’t know if I could continue to carry our daughter, go through labor and delivery and not take her home with me. It seemed so very painful. We had spent the weekend discussing it and talked with all of our parents. We are very lucky to have such supportive family and friends in our lives. Part of us believed on Monday, when we met with Dr. M that we would be sent to the hospital next door to start the procedure. Unfortunately, for couples in Texas who are in similar situations this is not the case. We were given the name of a clinic in Dallas that we could go to. We were warned of possible protestors and that just made me sad and disgusted. It made my husband extremely upset. I couldn’t believe that I might have to cross a picket line and be yelled at when the child I was carrying was very much wanted and loved. That afternoon, we did contact Dr. W. to see if he could help us within a hospital setting. It was another road block. He too, gave us the name of a clinic and did warn of possible protestors. We decided to meet with the other high risk doctor to see what suggestions he would offer. He was able to squeeze us in on Wednesday afternoon.
In the meantime, I did schedule an appointment at one of the clinics. After I got off the phone with them, I bawled for over an hour. The imagines of her ultrasound kept playing in my head. I could see her heart beating, her feet moving and her hands grasped together in front of her. After getting all the information from Dr. Z and being reassured that future pregnancies wouldn’t be affected by this, we went home to talk. We had a lot to discuss and both of us cried. It was not an easy decision to make or one that was made lightly. I was still scared that I wasn’t strong enough to make it through this pregnancy. We talked honestly and discussed our options, in the end the only decision that we could both live with was continuing on with the pregnancy. It was a good decision for us as a couple and a right decision for our daughter. Nobody said parenting was easy. We decided to create this child and we would be the ones to carry her to heaven. Neither one of us could knowingly watch as the doctors stopped her heart and then took her from my body. I know that I would have been sedated, but I am sure it would have been a decision that would have haunted me for the rest of my life. That being said, I do understand if couples with a fatal diagnosis do choose to terminate. Tears were shed and will continue to be shed. With the support of our friends and family we will make it through this time.
I have been reading about other women who have carried their children with fatal diagnoses. They seem amazingly strong and brave. I only hope I can be as strong as they are. All this being said, I still ask why her?, why me?, why us?, will I ever get to raise a baby? Many people have told us that God has a plan for us. I wish this wasn’t the plan he had in mind and I wish I knew what his plan was for our future. As, Steve told me the other night, God needed Willow and so we will carry her to him. I do hope to be able to hold my daughter alive, see her look at me and be able to tell her that I love her, even if it is just for a minute.
