Tuesday, March 11, 2008

Background Information about Bennett

On December 20th we had an ultrasound to find out the sex of our baby and see how things were progressing. At that time, our doctor noticed that our baby boy was not growing right. His legs and arms were measuring at least 4 weeks behind. His chest was smaller than normal and so his heart was tilted in slightly. The doctor at first glance felt that he may have a type of dwarfism, but he needed some help with a diagnosis. So the day after Christmas we went to Iowa City to talk to a specialist. They did an ultrasound and an amniocentsis to see if they could make a diagnosis. During the ultrasound, the doctor wasn't really finding anything that my doctor hadn't seen, with the exception that the baby's right arm bone was curving slightly. With this thought, they tested for a type of dwarfism where our little one would not survive. He would be still born or pass away soon after birth.

The other type of dwarfism that they tested for is the one that people most commonly think of when they think of a little person. The doctors however, did not think that this is what it was because usually this type does not show up as early and as severely as ours is.

Bennett's tests came back a week later and he did not have either of the two types of dwarfism that they tested for. His chromosomes were normal. There are over 200 types of dwarfism, so it is like looking for a needle in a haystack. In some types of dwarfism, individuals can live full, long lives, just with health concerns. There are also other kinds where Bennett won't make it.

On January 16th we went back to Iowa City for another ultrasound. At that point, everything looked very similar to how it did in December. His arm bones made 3 weeks of growth, his femur bones in his legs made only 2 weeks of growth. They were now about 5 weeks behind. His heart, brain, and kidneys all continued to look normal. His hands and feet and facial features all continued to look normal. His abdomen was about 2 weeks behind. When they look at the severity of his growth they have a ratio that compares the size of his abdomen to the length of his femur bones. When that ratio is at or below 0.16 they have been able to say that it is most likely lethal for the baby. 3 weeks ago that ratio was at exactly 0.16, now it was at 0.17. Very most slightly better. In looking at his chest, the doctor felt that he should have enough room in there for his lungs to develop.

On February 13th, we had another day in Iowa City. Bennett's femurs were continuing to fall more behind. They were about 7 weeks behind. The ratio that I shared with you before that compares his abdomen size to his femur length was back at .16, so he was right at where they have seen in the past that the dysplasia is lethal for the baby. His organs continued to look normal, but his chest size was not keeping up to where it should be. His heart is occupying the majority of his chest, where in normal babies it usually is about 1/3 of the entire size.

At this time, it is very likely that we will not have a diagnosis until after he comes into the world.