Once in the ultrasound room the tech started the ultrasound and was getting pictures of everything she needed to. Then, she said she would be right back as she had to get the doctor. When the doctor came in, who wasn't very pleasant and didn't speak English very well, she started asking a lot of questions. How old we were, was there a history of any miscarriages or other genetic disorders in our families, all the questions that make you start to worry. Then she asked if my doctor ordered a serum test yet. I said that he didn't. She kept asking if I was sure and that the test should be done between 12 and 15 weeks. Again I said that he didn't. The more she asked the more it appeared that she was trying to blame something on my OB/GYN . (At our post surgery visit I asked mu OB/GYN about the test, he said I was going to have it once the ultrasound was completed. If the test and the u/s aren't done very close together, the results are inaccurate) I asked if there was something wrong and all she had to say was that she had to look at the baby first. After a couple more times of asking what was wrong, she asked if we ever heard of neural tube defects. I had heard the term but didn't know what it meant. My husband had never heard the term before. She then began describing what a neural tube defect was. She said the baby, and they couldn't tell the sex then, had one of the worse forms, called anencephaly. I didn't know what it was, but my husband did. She said it is when the portion of skull over the brain doesn't form and the baby won't live. She said for me to get dressed and for us to come into her office.
When we went into her office, my husband had to close the door, otherwise the doctor would have left it open for everyone to see and hear what was going on. She began to explain in a little more detail what anencephaly was and said they didn't know much about it. She said that we had a 1 in 800 chance of this happening. During all of this my husband was really getting mad because we had to keep asking her to repeat herself due to her inability to speak English clearly. So instead of having to hear everything once we had to hear it multiple times, and very coldly at that. I asked to see the medical books so I could see what an anencephalic baby looked like, I just had to know. My husband already knew as he previously saw a show on it on tv. I asked the doctor if the organs could be used, she didn't know. I was upset and frustrated. How could someone who sees such tragedies not know anything about them?
After we arrived back home and composed ourselves, I called my OB/GYN. I told him of the situation and asked what we are suppose to do now. He asked what they had told me anencephaly was, he wanted to make sure I understood. He then said we had a choice to make, we could continue to carry or could choose to interrupt the pregnancy. He did not want us making any decisions right then. He said to think about it for a couple of days then call him. We went on line to get as much information was we could about the birth defect. We found that the organs could not be donated for several reasons; most babies are stillborn that have anencephaly, defects are being found with the organs, problems with the heart are just being found. After talking with our families, it was decided we were going to interrupt the pregnancy. It was the right choice for us, continuing would have been selfish and done nothing else but carry out a death sentence. The next day we called my doctor and informed him of the decision. He referred us to two of the best doctors available. He also told us that because I was in my 20th week not to be suprised if they want to do surgery right away.
We contacted the referred doctors office on Monday. Genetic counseling, which was pretty much useless, was scheduled for Thursday, August 3 and the D & E scheduled for August 4. The doctors office staff had a lot to be desired, for being the staff for doctors who head the genetic department of a womens hospital, they were not very compasionate. I can say that the surgery went well and I was on my way to physically recovering.
After not being given any support information or referral sites I started digging around on the web and found some good information. We briefly saw a counselor who had never counseled anyone in our situation before, but thanks to her calling the March of Dimes for us, we found two wonderful yahoo clubs that I feel saved our lives. Another counselor I saw, who recommened the counselor who called March of Dimes said something to me that helps me a lot. I am a Roman Catholic, who since this happened no longer attends the Catholic church as they were not there to help support us. What this counselor said what this: "Remember the level of sins were created by man. They mean nothing. God forgives you even before you ask him to". We also put together a pamphlet of information (books, web sites, etc) and will be giving it to our counselors, doctors and the genetics departement at the hospital where I had the surgery. If this pamphlet helps only one person, our daughter's life won't seem like an entire loss.
My husband has accepted this tragedy and keeps his main priority as helping me get through the greiving and mourning. Without his support I would not have been able to make as much progress as I have. We are not only dealing with the loss of our first child, our precious daughter, put her future and all the hopes and dreams we had for her. We also thank God everyday for the support of our family and our true friends. Everyday it gets a tiny bit easier, and it time the pain will fade but the emptiness will always remain.
Our daughter was born/died on August 4, 2000 and her name is Eileen Elizabeth.
