As part of the process in telling the real story, I have been tracking the resources on the internet about WHS. Of course, we all know the negative that is scattered about, with doctors and geneticists labeling the early renditions of the syndrome as scary and ridden with horrifying outcomes. For instance, Wikipedia has a page for WHS and this was the picture on that page:
Now, I don’t know about the rest of you, but my child didn’t look like this, nor have I ever seen another WHS child that looked like this. If anything, this makes me angry. I don’t doubt that this is a Wolf-Hirschhorn child, but I would prefer that anyone going to this page see the real deal as we would like them to see it. We are the true owners of this syndrome and should be able to tell it like it is.
Wikipedia is meant to be an objective source for information of all kinds, edited and created as an open platform of information. So, I took it upon myself to make certain that the real story (that’s the new tagline by the way), AND the real pictures are being presented to the world in a way that we want them to to hear about Wolf-Hirschhorn Syndrome. Wikipedia has now been corrected. Take a look for yourself… http://en.wikipedia.org/wiki/Wolf%E2%80%93Hirschhorn_syndrome
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This is awesome! What a positive thing for people to see when they look up WHS – Kendall’s beautiful smiling face! I remember seeing that (old) picture that wikipedia had posted online when Taylor was first diagnosed and I was researching the syndrome. As a NICU nurse, I thought to myself, there is nothing about that picture that shows WHS. That infant looks like what the demise of a micropremie can sometimes look like. I also don’t doubt that this infant tested positive for 4p-, but the abnormalities seen in this photo are most likely the result of an infant being born very premature.
I’m so thankful for your diligence and persistence in your efforts to change this apalling information on the web. Good work. Can’t tell you how much more comfortable this makes me to tell friends the name of Brodie’s syndrome.
Way to go! Thanks for your time and effort with this site as well as Wikipedia. Thanks for fighting for our kids.
Thanks for the kind words. If anyone finds other sites that need correcting, let me know. I’m also not married to this picture, but didn’t want to put another picture up there without approval. If someone else wants a picture up there, I think we can add additional photos. Just let me know!
Kevin I cannot thank you enough. I also was given a medical article from the Geneticist that diagnosed Dylan and that horrible picture was in it. I was appaled! It made me cry more than I already was. Thank you so much for posting Kendall’s adorable smiling face. You brought tears of happiness to me when I clicked on the Wikipedia link. I would love to add Dylan’s pic too. 🙂
I saw that someone had changed the picture and it made me really happy! If you do a google picture search on WHS that previous picture comes first. Or at least it did so when I first felt brave enough to do so. I found the academic article that the picture derives from. It was a short reported case study i some obscyre small medical journal by Turkish physician describing the antenatal screening by ultrasound in the second trimester. They had found kindey defects and clubbed feet in the fetus and karyotyping had diagnosed WHS. The couple opted for abortion in week 33 or 34 and the above picture is taken prior to autopsy. Therefore that picture repressenting WHS has made me so angry, but I felt that i could not change to a picture of my son as he doesn’t have the typical WHS gestalt. My son has a serious malformation of both his eyes.
I LOVED seeing Kendall’s happy face on that page!! So awesome!
Legato, I didn’t know the story behind the original picture, it made me sick to my stomach… And so sad too…