My hands are shaking and my stomach is upset as I sit down to write this update.
Things did not go well yesterday. I'll try to be as brief as I can, but this may get lengthy and I apologize.
SO I had the level 2 u/s yesterday. It wasn't pretty. The IPs were there. The u/s tech was very sweet, but the doctors definitely dealth the worst blow I could imagine in this situation:
"We're seeing multiple problems".. first thing she said directly to us.
To make a very long discussion fairly short.. the cleft that I saw on the u/s on Monday was verified. The baby has a mal-formed heart... but they couldn't tell us exactly what the malformation was, just that it was a significant heart problem. There was still no stomach bubble, so they said that it could be a structural problem, it could be a blockage, or it could just be that the cleft is preventing the baby from swallowing the amniotic fluid. They suspect a chromosomal problem or a genetic mutation. They did rule out Down's Syndrome though as none of the combined problems are indicative of DS.
*On another related note I got my Quad Screen back today also and it was negative for DS, Trisomy 18 and Neural Tube Defect*
We had a long discussion afterwards. The IPs wanted to know what percentage this child had for having a 'normal' life. They wanted to know how the child would fare without surgery. They wanted to know how many surgeries the baby would need. I know the doctor did her best to answer, but her answers were clearly based on 'worst case scenario'. We talked about how to go about getting more information; doing an amnio, etc. And I heard from behind my head "but what would be the point."
My worst nightmare. What would be the point!? How about knowing what is going on with this child that we all know you were so excited about; that you wanted so much. How about giving your daughter a fighting chance!? How about knowing what her real problems are so that you can better evaluate the situation!?
They've given up. They've decided that they want to terminate and that is the only outcome they are going to accept. We sat in the office of the genetic counselor for almost an hour. They told me I was unmerciful; I told them I was being the most merciful I could be by allowing the child the chance at life. They told me that the child would experience nothing but pain and suffering. I told them that with the information we had we couldn't be certain of that. I asked for the amnio, they said there was no point. I said I on't do it without knowing that her situation is an absolute confirmed death sentence. They said 'there is no point'. They tried to tell me that God gives you things, but even God is merciful so please be merciful and that was the last straw. I told them 'This is not God.. this is you. This is you making a choice and putting God's name on it." ... and I walked out.
The amount of anger that I still have about that meeting.. about the tactics they used to try and 'convince' me that getting more information was impertinent.. I can't even begin to tell you how upset and angry this makes me. If you know me at all you know that I am very pro-life. With this situation, if the baby was clearly not going to survive I would probably emplore the parents to allow me to carry until birth and then stay with the baby as she passed. However, they will not allow me to get enough information to make an educated decision about the likelihood of the child to survive. I might even consider terminating if the child was going to live a life endured in pain.. but how can I tell when they won't let the testing occur that would tell me so.
I know what some people are going to say. 'You are the patient, you can be the one to ask for the testing' but let's remember that I am uninsured at this point. As long as I am under contract, I have no way of obtaining that testing without paying for it out of pocket. That's anywhere from $2,000-5,000. I lost my job just before transfer. I am a single mom with two small children. Even with my surrogacy compensation I'm not rolling in money here. To be honest with this happening I don't know how I"m going to pay my rent in March. But regardless of all of that; it just isn't feasible for me to pay for the procedure out of my own pocket. People have suggested a fund-raiser or a donation service.. but I don't know how much I can trust that people aren't going to say that I'm just doing this for money, or that I'm scamming people. Lord knows I've already gotten that one.
So basically I"m still in the same holding pattern I was in the other day. I have more information, but not what I need to be comfortable making a decision. I've been through the experience of losing a child; having a baby born too early to survive. I can't voluntarily end the life of a child that could very easily have a fighting chance at life.