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| Wednesday, July 12, 2000 - Walking into the room to have my next u/s was nothing like it should have been. I should have been filled with joy and excitement, not dread which was exactly what I was feeling. The tech who scanned me was wonderful. She pointed out things to us that meant a lot to me, such as �Look at that little nose� or �Wow, this baby is active!� She then proceeded to tell us that she would point out some things to us because Dr. P was going to be explaining the situation to us anyway. She carefully explained that not only was there fluid on our baby�s head, but the bone measurements were not what they should be. For example, the femur measurement was only at 15wks instead of where it should have been at 20wks. The lower leg measurements were even less at 13wks. We were shocked. After calmly telling us all of this, I |
| asked her if she could tell the sex, and she said she would gladly try and find out. �Oh, this is a little girl� she said. I was so thrilled. I was wanting Kelsea to have a baby sister. After the u/s we went into Dr. P�s office so we could have a conference. He looked at the u/s with us, explaining things here and there, and making jokes. Excuse me, but how can someone be making jokes at a time like this? He finally told us that our daughter had a skeletal dysplasia which essentially meant her bones were short. He told us she would probably not make it. Looking back, I don�t know how he could have told us this because there are over 200 different types of skeletal dysplasias, many non-lethal, and he had no clue at that point what we were dealing with. He told us there would be a genetic counselor from the University of Virginia visiting the next day, so we scheduled an appointment with him. |
| Sydney's Story |
| Thursday, July 13, 2000 - We went in the next day to see Dr. W expecting the worst. However, instead he gave us much hope. He told us that our daughter�s case was not mild, nor was it severe. It was simply too early to tell. There was no need telling us too much information because it could be so many different things. He told us some things they would watch for on follow-up u/s were things such as heart problems, brain problems, or a narrowing of the chest. We just simply had to wait. |
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| Thursday, August 10, 2000 - Dr. W was at my OB office again, so we met with him. Since Dr. P was gone, he just had our word to go by. We told him what the tech had told us from the last u/s: her limb measurements were still extremely short, her head was measuring too big, and her chest seemed to be narrowing. Prior to this visit I had done some research on the Internet, trying to become a little familiar with some of the different types of dysplasias. For instance, I knew if he mentioned this particular type it would be good, but if he mentioned that one it would be bad. He told us from our description of what the tech had told us it sounded like Sydney had thanatophoric dysplasia. I kind of laughed and asked him to repeat himself, so he did. My heart sank...I knew the prognosis was not good. My instincts were right. Dr. W told us that infants with this type were either stillborn or died within a few days of birth. They could not survive because their chests were too small to allow their lungs to develop properly. I can honestly say I do not think there is any worse news than being told your child is not going to live more than a few days at the most. What about all of the dreams and plans we had for her? What about Kelsea being so excited about her baby sister? This baby was very much loved and very much wanted. Why us? We had a couple of more u/s after this, and each of them seemed to get progressively worse. Sydney�s head kept growing, but her arms and legs pretty much stayed the same. We were also told it looked like her heart filled 3/4 of her chest instead of the normal 1/3. This was not a problem with her heart, which was healthy, it was a problem with her chest. |
| 7/12-8/10/00 |
| Tuesday, August 8, 2000 - I was scheduled for another u/s even though Dr. P was out-of-town yet again. However, since the UVA doctor was coming again Thursday, they went ahead and scheduled me. I was pleased to see that we had the nice tech again. As before, she once again took great care to make sure she pointed out special things to us, such as the way Sydney kicked constantly or when she stuck out her tongue. Brian asked if we could have a picture and she said sure. No sooner had Brian asked than Sydney turned her head and looked right at us. What a beautiful picture! The tech took measurements again, and I was dismayed when she told us they were basically still the same, all except her head which had grown more. Then she said words that I never wanted to |
| hear, she mentioned something about the chest being narrow. From talking with Dr. W from UVA we knew that was not good news. |