Wednesday, August 19, 2009

I got a wonderful (and delicious) surprise from Kendra and Tony last week (see picture)! And I also included a little snapshot from when the baby was 11 weeks old (truly outdated by now - it has grown a lot since then - but cute nonetheless!) BUT, to say things are going smoothly would have to be a lie! These past couple of weeks have been the most extreme roller-coaster of emotions possible! It all started last Monday when I went for the first trimester downs screening (the NT scan) which is an ultrasound to measure the thickness of the fluid on the back of the baby's neck and it is also combined with a blood test to determine the baby's risk for chromosomal disorders. Typically people will get like a 1 in 10,000 (or some other high number) risk for something wrong. Well, we get the ultrasound done and then meet with the "genetecist" (contracted out from my OBs office) and she was like, "Well, from what we are seeing this baby has a 1 in 2 chance of having a chromosomal problem, and even if the chromosomes end up being normal, only a 17% chance of making it to delivery without dying in utero". This doctor was cold, matter-of-fact and totally lacked any spark of compassion or personality. It was just me and Kendra because Tony was out of town, and we both look at each other and she starts to cry. Fighting back tears myself, I try to concentrate on what the doctor is telling us, and try to figure out what it all means. This doctor stated that she believed we did not need a second opinion (and suggested that by getting one we were just trying to get somebody to lie to us tell us the baby was fine) and said we should go straight to having an amnio, if the baby even survived that long. :( It was a nightmare - the worst news ever. She wouldn't write down the information she was giving us because she didn't want us to go on the internet and get wrong information, so she just said if we had any questions to just ask her right then. YEAH - that's easy - you've just been dumped on with terrible news and are expected to know what to ask - stupid doctor. So we had the choice of scheduling the amnio with her or with Evanston hospital, so I went with Evanston. I scheduled it and like 20 minutes later they called me back and said that based on the results that got sent over from my OB, they didn't feel comfortable going straight to an amnio (which has a 1 in 150 or 200 risk of causing a miscarriage ... the geneticist told us it was 1 in 1600 - totally wrong information). So they had me come in the following day for a level II ultrasound just to make sure. And lo and behold, that doctor had absolutely no basis for making that diagnosis, and not only that, the levels they measured fall into a NORMAL category. They are the high end of normal, but nonetheless normal. This is shocking to me - can you believe that a doctor that you are supposed to trust can make such a huge error in reading results?? And had the hospital not questioned it, we would have went on to have the amnio and possibly risked the life of the baby for nothing. It just makes me sick to know that we were given incorrect information, and in such a horrible manner. We found out from Kendra's fertility doctor that this specific genetecist has a 60% termination rate with her patients, which is absolutely outrageous. We are all so upset. Anyways, I guess the moral of the story is to never trust a doctor and always second guess things that don't seem right. We are currently in the process of talking with the doctors of my OB office and we are going to meet face to face to discuss this "genetecist" and her practices. I feel as if we are in good hands now, but what about the hundreds of other women this doctor treats and may or may not give mis-information to? It is scary - heartbreaking. So we will see what (if anything) can be done to prevent this from happening to others.

Of course we are not totally out of the woods yet. Since the measurements were on the high end (after going to Evanston and getting our bloodwork back, our risk came back at 1 in 108 of having a chromosomal problem - similar to what the odds would be for a 39 year old, even though Kendra was only 32 when the embryo was created). But it certainly isn't the dire situation that the first doctor had said. The baby went from having a 50% chance of having something be wrong at that first appointment, down to 1% - pretty drastic if you ask me!!!

So after much discussion with eachother and with all of the doctors, Kendra and Tony have decided to go ahead with the amnio. It is extremely hard to shake that awful news we originally recieved (even though our current doctor insists that the original diagnosis was incorrect), and they just are hoping to receive good news from the amnio and we can all go on to enjoy the rest of this pregnancy, and if the results come back not what we are hoping for, at least they can prepare for what is to come. But for sure they will have answers by the end of next week (and will know the sex of the baby for sure!! At least something fun to get out of a not so fun experience!). We are all just praying and hoping for the best at this point.

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