Saturday, April 4, 2009

How Life is Measured

I wish all lethal diagnoses were wrong. I wish medicine could just fix the problem. I wish people did not have to do through such pain and torture. I wish everyone who was ever told the same thing we were told have had their stories end the same way ours did. I know, from speaking to many people, that this is not the case. Many people's stories end how they were told they would. It's sad and unfair and I wish I could change that.

However, there ARE people who have had the exact same experience we did. It's nice to know their journey did not end with such a heartbreaking conclusion. It's also sad that know that these lethal diagnosis are given to people who do not have a lethal situation. The diagnosis is given with such certainty. I'm not against certainty. I'm just against it when it's not warranted. Diagnosis by ultrasound it VERY difficult. It's just hard to get a good snapshot of whats going on. I almost feel that every diagnosis given based solely on viewing ultrasound pictures should be required to come with a disclaimer that there is a fairly decent chance they are wrong.

Here's another example of why I think that disclaimer should be required:



  1. Amen to that! Now that I have a minute to sit back and realize what we went through, I am angrier than ever. How could you ever difinitively diagnose lethal skeletal dysplaisa with NO HOPE #1 - on a child the size of a hand, #2 - inside someone's womb and #3 - when there are so many cases of misdiagnosis! So glad you wrote me! I wish we lived closer!
    Catherine Wright

  2. Great words! I wanted to say hello to Evan and the family from Amelia. She is 3 months now and has achondroplasia. I enjoy your blog and admire your strength, positive attitude. Great writing too. I send my prayers and good energy!

  3. My husband and I received the dreaded lethal diagnosis you are speaking of... unfortunately. In August, we were given the news at our level 2 ultrasound that our little girl had lethal skeletal dysplasia. We went to the best genetic specialists in the state and they confirmed the news. While looking at her tiny body, it was pretty obvious that what they were seeing was a little girl who would not make it. Worst day of my life. :( After testing, they still couldn't figure out which form it was because the mutated gene could not be found. It's refreshing to know that not all parents had to go through what we did. It was horrifying news that no one should ever have to hear. Congrats on your beautiful baby.