Boy with CF gene transferred to another school

Avatar for Cmmelissa
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Registered: 11-13-2008
Boy with CF gene transferred to another school
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Wed, 10-17-2012 - 4:50pm

I thought this was an interesting story, his parents disclosed on enrollment paperwork that although he carries the gene for CF, he's never been clinically diagnosed:

A California boy has been ordered to transfer to another middle school because he carries the gene for cystic fibrosis, even though he doesn't actually have the incurable, life-threatening and non-infectious disease. His parents have gone to court to fight the move.

Their son, 11-year-old Colman Chadam, was told last week that he’d have to transfer from Jordan Middle School in Palo Alto, Calif., to a school three miles away because he posed a risk to another student at school who does have the disease, according to TODAY.

http://todayhealth.today.com/_news/2012/10/17/14509787-boy-kicked-out-of-school-because-he-has-gene-for-cystic-fibrosis

Have you ever run into an issue with another child at your school with CF? 

Avatar for adamsmomplus2
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Registered: 09-09-2000
Thu, 10-18-2012 - 11:57pm

My first reaction is this: This is preposterous. Seriously, it's not the gene it's the disease. This shows a lack of very basic (and I mean high school level) genetics. CF is a recessive genetic disorder. It REQUIRES 2 genes to have the disease and it is GENETIC, so not contagious. And why was he transferred, the student at risk for anything (increased risk of infections, hospitalizations, MRSA carrier, etc.) is the one with CF. The "medical experts" they consulted are ridiculously uninformed and ignorant.

My more researched and thoughtful reaction is this: I have also looked up more on this story and in reading several different sources it is unclear if he just has 1 CF gene and is a true "carrier" or he has 2 copies of different mutations and is asymptomatic. Here is what makes me wonder. Several articles say he has had a negative sweat test. If he only had on CF gene, why do a sweat test? I guess it is possible the parents wanted to make sure, but it would make more sense if he had 2 copies but being asymptomatic, they wanted to test him to see if he had higher sweat chloride levels, and therefore CF. Either way, he does not have any manifestations of CF, having had a negative sweat test and still remains no threat to the other students in the school (siblings apparently) with CF.

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Avatar for adamsmomplus2
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Fri, 10-26-2012 - 11:42am

So....as more has come out, it appears that this boy does have 2 CF genes and could therefore develop CF, although now he is asymptomatic. He's had a negative sweat test (good for him) so he doesn't exhibit symptoms and his systems are not affected. This doesn't mean he never will be. With that in mind, I don't know what the school should/could do. They have an obligation to all 3 students (the school from which he was transferred actually enrolls siblings with CF). I think one consideration of the school district may have been that the siblings had been enrolled in that system for several years while this young man had just moved in, so perhaps it would be less disruptive for him to change schools/friends than the siblings? It sounds like another case of we are only getting a very small part of the story.

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Avatar for Cmmelissa
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Fri, 10-26-2012 - 4:55pm
Thanks for the new info, I hope they can find a solution that works for everyone involved.

Avatar for adamsmomplus2
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Wed, 10-31-2012 - 10:52am

I really like this Q&A about this situation. Seems fair and balanced. 

http://ucsdhealthsciences.tumblr.com/post/34179911836/11-year-old-colman-chadam-has-been-removed-from

Also, something that has been bothering me about this is how it is being presented and worded. Whether that is the media spin or the parents, I don't know, but most of the headlines are "banned from school" "kicked out of school" and not "transfered." I don't know anything about the school system there, but I do wonder why the parents didn't go see and try the school to which he was transferred. It's not like it's clear across town, it's 3 miles away. My kids have to walk to middle school that's a mile-and-a-half away and my friend's kids go to elementary and middle schools that are 3 miles away from where they live.

The other thing that bothers me about this situation is the potential for developing CF. Before I had a child with CF, it would have been completely off my radar, however, having 3 children without any chronic conditions or special needs and now having one with CF, I realize that, even though we pretty much have things under control with treatments and planning and schedules, it's not "normal." It's a lot of dang work! So, I think, looking from the outside in, if being in close proximity with kids with CF had the potential of putting my child at risk, I would rather he stay out of that situation, keep him healthy as long as possible. Even if the risk is low. I guess I think about it this way, we have had no car accidents in our family for over 13 years (knock on wood), but we still wear our seatbelts every time, even just driving the 1 block to Gramma's house. The risk is low, but we do all we can to keep it as minimal as possible.

All of this is thinking aloud because this situation has been on my mind quite a bit. I keep looking for results of the hearing by the school district to see what will result. I really hope this isn't just prep for a lawsuit.

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Mon, 11-05-2012 - 6:20pm

I would definitely want to know if there was another kid with CF at Emily's school, but I don't think it would be fair for them to make him leave.  The decision should be made by the parents.  Although it is not a good situation, maybe the parents would be fine with it.  If one of them had a problem with it, they should be the ones to move.  I would move schools to keep Emily safe, even if we were at the school first.

Avatar for adamsmomplus2
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Registered: 09-09-2000

Update: An agreement has been reached and he is back in the same school with the other kids with CF. Here's an article:

http://www.sfgate.com/bayarea/article/6th-grader-back-in-school-despite-genes-4010983.php

I realize that this whole situation ended up being the extreme, but there is one statement by his parents that bothers me. In speaking about CF cross-contamination protocols put in place, they indicated they didn't feel they were necessary but they "went along" with it to get him back in school. Perhaps things are taken out of context, but it comes across as them dismissing that there really is a risk for kids with CF, and their son, although asymptomatic now, my develop what they call "classic CF" in the future. If it were my son, I would insist on the best protocols for ALL children involved. I don't know, this whole situation has made me uncomfortable from the start. Something bugs me about it, but I can't put my finger on it. 

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Avatar for adamsmomplus2
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I think I've figured out what bothers me. I think it is because of the way the parents approached the situation. His parents certainly have every right to air their situation to the news media and put their 11-year-old son on the Today show. However, the result is, that people now blame the school for "singling" out this young man when it was his parents who decided to make this a public matter. Please tell me if you agree or disagree. I am not opposed to being told I am wrong or mistaken.

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Avatar for Cmmelissa
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Fri, 11-09-2012 - 3:09pm
I totally see what you are saying. To me it's like the parents aren't really looking at the big picture and are only thinking of their son. It also doesn't appear to me that they've tried be reasonable at all with the school district. Personally, I wouldn't want my child to be at the center of public scrutiny like this, and would do everything I could to keep them safe. It doesn't sound like the alternative school was a bad option at all, and wondering why they are insisting on putting him or other kids at risk?

Avatar for adamsmomplus2
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Registered: 09-09-2000
Wed, 11-14-2012 - 11:33pm

Exactly, Melissa. You said it much clearer.

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