If you have been following this blog for awhile now you might remember we had a guest blogger a few months back. She is in one of the Infertility groups that I am in. She's back with news and left with a heartbreaking choice.
*This post is going to bring you to tears. We would like for those that might have negative comments to keep them to themselves*
When Termination Becomes the Best Option, But the Most Devastating
Well I am back but I’ve guest spot here before, you know that one chick cop. The one who had infertility. And I have had such a crazy ride. Sadly things just seem to always be done the hard way with me. My heart is shattering. Let me explain.
After many years we finally were able to conceive this year with IUI. A year on medications, shots and ultrasounds. A year of trying methods. Round number two worked like a charm. Everything was going beautifully. As I sat in the office I was ecstatic that I was pregnant, waiting for my doctor to give me numbers and to see the first ultrasound. I was in tears I was in such joy. As we all know a baby conceived after such a long road and journey of infertility is a rough one.
As the first month progressed I became absolutely horribly sick. I couldn’t breathe I was coughing so bad, and I wouldn’t stop regurgitating. Two weeks later things started to smooth out. I was still sick all the time but hey, that’s pregnancy I figured. As months passed I noted that I was still having pretty severe cramping in my stomach. Unfortunately a doctor I was supposed to be seeing was not being provided to me. Complicated OB. I should have been seeing them all along but a fail on my generic OB kept that from happening. My doctor just waved her hand and said that my pain was normal, it was round ligament pain. The weird sensations of a ball in my pelvis and a sharp pain in my kidney/ovary area was nothing. She talked down to me. Constantly. I finally had enough and switched my assigned OB.I finally decided to go into the complicated OB office myself and make my appointment. As the Generic OB was supposed to be following up with appointments through them, nothing had been done.
The sad part, is this would have been my saving grace. 20 weeks later and my husband and I are nervous but excited to find out the gender of our child. We sat in the Complicated OB office waiting for that fetal assessment level 2 ultrasound. As they moved around my stomach I noticed they spent a ton of time on the head, heart and spine. I was really curious as to why but I figured it was normal. Then another specialist came in to review the ultrasound. I started to think the first might not have been tofamiliar and wanted to get a second look. As I watched in awe of the moving figure in front of me, my heart dropped as these words came out of the technicians mouth. “The nuchal fold is at a 7.6.” I figured it might be a minor issue and asked what it was an indicator of. “Downs Syndrome” My heart raced. I was freaking out. I could handle that but I was really hoping there wasn’t more to the situation. I learned in my teenage years that many times if there are other complications attached to it, it can be really bad. I went to a school that specialized in more one on one teaching, and had a very large department for just kids with Downs. I had seen the horrible extremes the issue could bring up. The tech decided to get another doctor as she also had a few other things she was concerned about.
I grabbed my husbands hand like I was falling off the face of the earth. Tears sprang to my eyes as we sat there in the room alone waiting for a doctor to come in. I was hoping everything was just the first of many heart attacks this child would bring to us.That it was a fluke. Everything was OK. After all, we were having our dream. A boy. The door opened and she came to sit with me. As she moved my stomach around I felt a sharp pain again in my stomach and she waited for a few seconds before putting the wand against my stomach. The child was upside down. Head still down in my pelvis but a bit more up and down. That’s when I saw the look. The face that told me everything. She focused on the heart and we watched it beat. However, It just didn’t look like what I had seen when I had my heart echo. It was partitioned in a weird manner. “C, there is more than likely a 5th chamber, or a flap. I am a bit stumped as to what I am looking at here.” She let me have that sink in as she moved to the head. The nuchal fold was measured and it seemed to have altered in numbers. 5.6 . I was happy to note that but the first number was supposedly more accurate. As we sat there they tried to get facial features. Sadly nothing looked like a child’s face on my ultrasound. So they moved back to the spine. It looked like when a computer malfunctions and there’s a skip of white lines across the screen. The back was arched heavily and the sharp pain resumed in my ovaries. The doctor just took a picture of it and moved on. She then put down the wand.
“C. We have some options of things to do but I really recommend we get an amniotic test from you today.” I nodded, knowing that was a best option. I had heard about them done but I knew it was a bit late for the test with my situation. After some research, I found out that it could be done a bit earlier too. The doctor prepared me for the procedure and explained everything. It was not comfortable, I did not enjoy it. OK I hate needles. We all got a much needed laugh as one of the awesome nurses mentioned my tattooed covered arms and back. I retorted, but it’s a different needle than this monster. But the 99.99% results outcome is what I needed for peace of mind. I needed to see a neonatal cardiologist for the heart as the situation was too complicated for the Dr’s expertise. At this point I think I wanted to throw up my heart.
As we left the office with appointments in hand and a promise that we would get a call in the next 2 to 3 days with initial results I felt like the world was over. I cried in the car on the way home. All 1.5 hours of it. I cried at home, and started doing research. I prepare for the worst with hopes that the best happens. However, this time the worst is what I needed to prepare for. It was worse than I could have ever imagined.
A few days later our call was my worst nightmare. Between conversations of two doctors, one being the heart specialist, my little boy had a pretty bad heart issue. (I knew this would cause all sorts of complications in the future of their life, as the type that was described to me I had seen first hand. Both in a family member-who had a horrible life- and in school.) There was a probability he wouldn’t live past one, and if he did he would have childhood onset Alzheimer’s. Downs or Trisomy 21 was found. They were not sure but it showed faint possibilities of Trisomy 18 and Trisomy 13 as well. They needed to run the full panel to make sure. It could take up to two more weeks to be sure of everything else. It was a horrible and bleak prognosis, but the cardiologist who received my report gave me worse news. Seizures in the womb. The arch of the body was not a good sign as it showed seizures, and they couldn’t find the face. The term was a “skeleton” face. As he said it was the best way to describe what he was looking at that made sense to the average adult. It didn’t mean it wasn’t there, but they couldn’t find it. This child is in pain. I knew it. I was in pain, both mentally and emotionally. I couldn’t do this to a child. His heart is working overtime, his back arched all the time, and the movements were jerky and not very smooth. The arch angle in my womb was heavy. The quality of life was horrible already.
That’s when it hit me. As I spoke to both of them I knew the best option for the already immense suffering of this child. Termination. As I spoke to my two doctors they agreed with me that it might be in my best interest if that’s what I wanted to do. They also notified me of the horrifying complication that birth could bring to me since the heart was really really bad. They gave me all my options, but we had already known what was to be chosen.
Now I sit here, with excruciating pain both in my heart and stomach. My head is killing me as the mental anguish and toll it takes is heavy. The child still moves but with rapid and sharp pain. Heavy and extreme. It stops me in my tracks. About 3 times an hour. Tears well my eyes as I feel not only movement but seizures as the body stretches out from pelvis to kidney. My heart breaks. I'm wearing thin. In order to find a place to help I was sadly turned away from my OB as they would not terminate in this circumstance. I was left to find an abortion clinic. Three days from now I have to be fully sedated and undergo surgery to remove the fetus due to the extreme conditions. Thankfully I found a place that has this happen in a hospital. I have to drive about three hours away. I am ready to just end the pain for my child, as I so desperately wish there wasn’t this route I need to take. My husband finally breaks down in front of me. He hasn’t done that in 10 years. Since his father passed. I'm so lucky my marriage is so strong. That my husband is so attentive and loving. That he promises to be with me no matter what happens. More than 60% of people in this situation divorce. Three days from now, my journey in infertility and genetic complications continues. Three days from now I will be without my baby boy. My everything. Three days from now I will come home from the hospital with empty arms.
You are not alone if you’ve made this choice, or have to. It’s OK to cry. I am…
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