I’ve hesitated to bring any attention to an article which was published this week regarding Krabbe and Newborn Screening because it’s incredibly inaccurate and biased. It has caused quite a stir among us Krabbe families and we’ve been trying to figure out how to respond.
So, while I don’t want to drive traffic to this terrible article, at the same time, I feel that being silent is the worst course of action.
You can read the article here (and it was also published on WebMD here).
The article was written in response to a law making its way through the Georgia state house to allow parents the option to have their children screened for Krabbe. While the authors make an attempt to sound unbiased, it clearly failed and their bias is evident. The title itself is evidence of that.
Not only did they misquote two Krabbe mothers, but they also reported false information in an attempt to show their bias. They gave false data about transplantation, and they also didn’t talk to any families whose children were successfully transplanted years ago. They were also wrong about the oldest known survivor of Krabbe, among many other inaccuracies in the piece.
The authors chose to interview those who had their babies flagged by Newborn Screening who ended up not having Krabbe (false-positives, which is an inaccurate term anyway for Krabbe; had the doctors handled it correctly, they would have said the baby was flagged for further testing, not that they were “positive”) and discussed the “stress” and “trauma” caused by those two weeks of waiting for the news. I’m sorry, but give me a break. LOSING YOUR CHILD when you could have attempted to save their life is traumatizing but the article said NOTHING about that. Waiting for further testing to be completed, if the doctors prepare them correctly, is not as bad as they portray it. This study provides a look at false-positives and how they should be handled.
Just because you are a medical doctor doesn’t mean that you are automatically an expert on Krabbe. It is clear that we as Krabbe families know far more about the disease, the pros and cons of treatment, etc. than these authors do, and we wish they would have consulted us before writing such a frustrating article.
There are SO MANY success stories not mentioned here, so many children alive and thriving today who would have died from Krabbe had they not had a transplant. And they wouldn’t have been able to receive a transplant had it not been for Newborn Screening. Yet, the article barely mentions these children. Convenient.
For an unbiased look at the lessons learned from Newborn Screening for Krabbe, read this article. Talk to the parents who lost a child to Krabbe, and those who were given the option (THANKS TO NEWBORN SCREENING) and chose to transplant their child to give them a chance at life. Talk to someone who has actual life experience with the disease and don’t rely on articles such as this one.
Newborn Screening for Krabbe is NOT harmful but is essential and beneficial for all involved. We will continue our fight, no matter what the opponents may say.
(You can also read this post, a letter from our friend John Neal to the authors of the article.)
Even So, Joy 
This kind of thing is so frustrating…. My doctor had no idea what Krabbe was. She knew leukodystrophy, but not the term Krabbe. You two have done so much !
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You GO girl! VERY thankful for loving caring parents like you. God gets the glory J
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Hi Lisa. Thank you for this advocacy on behalf of prospective parents. I love your heart and the hard work you’ve done to research all this. I chose not to go to the inaccurate article as I didn’t want them to count my visit as support, but I was wondering if there is a comment section on that article. If there is, then perhaps it is worth me going and voicing my displeasure in their comment section at their biases and inaccuracies. Let me (and others) know if that opportunity exists and if you think it would be helpful.
So sorry you have to be subject to ‘junk’ like that, as you indeed know it is a life and death matter, so it has to be absolutely mind-boggling and frustrating to run across something like that. Sending you love, hugs and prayers.
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Excellent response, Lesa. I hope you have written to the powers that be at Web MD as well as the authors of the article you mentioned. I’ll read that later, but just wanted to say that I’d trust you and other parents of children with Krabbe FIRST. As a mother who lost her child to an ultra-rare syndrome that has no option of lifesaving treatment (although nowadays some lives are being prolonged somewhat) I can tell you what I would be saying right about now were I in your position. There is no excuse for such shoddy reporting when lives are potentially at stake.
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Lesa,
I can only imagine how it feels to have all of your efforts undermined on such an influential platform.
I hope that Krabbe families, and others who are struggling with other disorders, continue to share their stories despite the risk. Please know there are many of us out here working to stay fair and objective who really value your willingness to talk about the toughest of losses. I learned so much from you and hope I was able to convey just a few of the issues related to screening and treatment.
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I think Krabbe parents should ban together and write an article about the realities and post it in response to the idiot who clearly knows nothing. The choice to be Bias is a huge mistake because in the end if this view is kept it will only hurt future Krabbe babies by not allowing for the screening and further testing you all have extreme strength and I know that you all can come together to do this. This is what I feel the appropriate response should be. However I am not a Krabbe mommy but I have watched Adilyn Who lived in my state go through hell because she was not screened and there fore suffered the inevitable fate of infantile Krabbe.
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