Losing Myself

Diagnosis: Spina bifida

By Darci

Last year at this time we had decided we were going to try to conceive (TTC.) My husband was 32 and I was 27. I stopped my social smoking and drinking, started taking prenatal vitamins and stopped birth control. My husband was very cautious and we used condoms till march to make sure everything was out of my system. Once we started TTC things happened fast, and I had a “Big Fat Positive” pregnancy test (BFP) by the end of April. I miscarried on June 6. I was sad but since it was our first try I figured "these things happen" as they all seem to say.

We tried again and we had a BFP by August. We were so happy, but cautious and guarded, because of last time. Time went by and things seemed good. At three months I told my family and his. We did the triple screen and it came back negative. We thought we were out of the woods. I was still reserved, but very excited about our future and our baby. At 19 weeks I ordered my car seat and stroller. Everything seemed so wonderful and exciting. I never had morning sickness and my main complaint was that I wasn't hungry and was having problems gaining weight. Everything seemed perfect, but it wasn't.

On December 1st, 2008, at 20 weeks 4 days, my husband and I went in for the anatomy ultrasound. The tech was quiet but answered our questions politely. We found out we were having a boy! I was totally expecting a girl but was happy either way. The tech seemed to spend a lot of time on the stomach and I actually asked about it. I also noticed something on the spine and asked if our baby had a tail, she said yes. I was a little concerned with the tail but figured it would be OK. She got me to get up and walk around for a couple min to "move the baby" then she came back and took more measurements. Again she left, this time asking me to empty my bladder in order to get the baby to "move" so she could get better pictures. I now believe she was consulting with someone else, but I don't know. We had an appointment 2 floors down with my ob/gyn right after the ultrasound. They told me they faxed him the report and to go right down to see him. I was totally clueless as we rode the elevator down, talking about how we would be the first ones of our friends to have a boy and just generally being excited and happy.

When we got to the Dr.'s office they brought us right in, ahead of everyone else in the waiting room, and still I didn't think anything was wrong! That's when he gave us the news... our baby had spina bifida and he had a serious amount of fluid in his abdomen. We would have to go for more tests and see more knowledgeable doctors. I cried and cried. At the subsequent ultrasounds we also learned that our little boy was missing a kidney. We saw the genetic councilors and they did an amnio but had no idea why our baby would have those three symptoms. They have no correlation to each other. We decided to terminate, the fluid in the abdomen was a major concern and they did not believe he would make it to delivery. We went in for the appointment and they did another ultrasound but the fluid was gone! We had no idea what that meant but they sent us home with some info on spina bifida and an appointment for the next week. I went into shock and almost passed out on the way to the car. I wasn't going to lose my baby that day like I had planned, everything was up in the air.

We talked to more Dr.'s and the genetic councilors and no one had any idea what caused the fluid or where it had gone, they also had no idea what damage it had done or if it would come back. I was horrified and felt I had no information with which to make my choice. So we researched spina bifida and spoke to a nurse at the spina bifida clinic. The outlook wasn't great, but then his one kidney started to swell due to reflux and we decided to terminate again. We went back into the hospital and saw a different Dr. When we asked about termination the Dr. looked at me like I was a monster and said she would not consent to that because the fluid was gone and there were no immediate risks to the baby.

I was so angry and upset (but I don't deal well with anger and just cried sooo hard) and we went home again in a daze. I didn't know what to do - I was 23 weeks that day. I talked to the genetic councilors again, they told me how the hospital I went to has a really bad system that has no ruling committee and whoever is on call gets to make the choice. They looked into it for me and found that there were only two Dr.'s able to do a labor and delivery (l&d) after 22 weeks in the area and they were both on Christmas holidays. Our only option was to go to Kansas. Again I was devastated, after much discussion and many tears my husband and I made the decision to go to Kansas and terminate. The procedure was covered by our insurance, but we had to cover the transportation and hotel. So we went and on Dec. 29, 2008, I delivered my beautiful baby boy at 24 weeks 4 days. That month was the worst of my life and it scarred me in more was than I would ever have believed possible, but I did get to see my first child and set him free from a life that most likely would have been short and full of pain and surgeries.

I am still so upset not only for our horrible loss but also because I was forced to make my Heart Breaking Choice three separate times! I am absolutely sure that we made the right choice for our baby and ourselves because I had to keep searching my soul and so did my husband and decide, over and over. In this there is no right choice, only different levels of pain and suffering. We chose to take on the pain and suffering all at once, instead of making our child bear that burden. It feels right for us, but I still miss him and the life I had prepared for and wanted with all my heart. I feel broken and lost and am just not sure what to do now. It feels that if I move forward I am leaving that life and my baby behind. I don't want to lose him, but I'm scared that I will lose myself if I don't...


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