DC - Justina gets standing ovation from Congress

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I just had to post this lovely snippet from a follower on the facebook page talking about BCH: "The neurology dept is a bunch of nut job doctors. They completely misdiagnost my daughter. I would love to name the female doctor who treated her but I won't. Huge bags under her eyes and clearly a alcoholic. We got emails from her at 3 am, when normal functioning people are sleeping."

I can't believe the thought process of some of these people. Apparently she's never thought about the fact that medical personnel don't always work the same hours as "normal functioning people".
 
Here is the Bill H. 106

https://malegislature.gov/Bills/189/House/H106

SECTION 1. Chapter 119 of the General Laws is hereby amended by inserting the following new section:-

Section XXXX. (a) Notwithstanding any general or special law to the contrary, there shall be an independent commission to study and report on the recent case before the Department of Children and Families regarding Justina Pelletier. The commission shall consist of: the inspector general, or a designee; the attorney general, or a designee; the state auditor, or a designee; 2 members of the house of representatives, 1 of whom shall be appointed by the minority leader, and shall act as chair; and 2 members of the senate, 1 of whom shall be appointed by the minority leader. The commission shall research and assess the cost of the case, and the evidence and reasoning that led the Department of Children and Families to take Justina Pelletier away from her family. The commission shall also conduct an investigation of Massachusetts General Law Chapter 119, section 51A, focusing the number of families affected and any changes that can be made to the law to limit improper use.

(b) Said report shall be filed with to the chair and ranking minority member of the house committee on ways and means, the chair and ranking minority member of the senate committee on ways and means, and the clerks of the House of Representatives and senate no later than October 15, 2016.”
 
i.b.nora said:
Here is the Bill H. 106

https://malegislature.gov/Bills/189/House/H106

SECTION 1. Chapter 119 of the General Laws is hereby amended by inserting the following new section:-

Section XXXX. (a) Notwithstanding any general or special law to the contrary, there shall be an independent commission to study and report on the recent case before the Department of Children and Families regarding Justina Pelletier. The commission shall consist of: the inspector general, or a designee; the attorney general, or a designee; the state auditor, or a designee; 2 members of the house of representatives, 1 of whom shall be appointed by the minority leader, and shall act as chair; and 2 members of the senate, 1 of whom shall be appointed by the minority leader. The commission shall research and assess the cost of the case, and the evidence and reasoning that led the Department of Children and Families to take Justina Pelletier away from her family. The commission shall also conduct an investigation of Massachusetts General Law Chapter 119, section 51A, focusing the number of families affected and any changes that can be made to the law to limit improper use.

(b) Said report shall be filed with to the chair and ranking minority member of the house committee on ways and means, the chair and ranking minority member of the senate committee on ways and means, and the clerks of the House of Representatives and senate no later than October 15, 2016.”
Click to expand...

They need 18 months to figure out what happened?
Some of us on this thread could fill them in in about 18 minutes.
Sigh.

I do wonder what will happen if their research contradicts the Official Pelletier Version of the events, and I also wonder if this investigation will be the substitute for the always-threatened, never-filed lawsuit with which they keep tantalizing their followers. (It would save the family big bucks if they did not have to hire a lawyer to push their flimsy accusations.)
And thirdly, I wonder if the promised report will ever see the light of day, especially if it contradicts what they already believe is gospel truth.
 
Beau Berman has been NOMINATED by The 38th Boston/New England Emmy Awards in some odd category about stories over a period of time, for his work on the Justina charade. Winner will be announced at a din-din on May 30th I think it is.
 
i.b.nora said:
Beau Berman has been NOMINATED by The 38th Boston/New England Emmy Awards in some odd category about stories over a period of time, for his work on the Justina charade. Winner will be announced at a din-din on May 30th I think it is.
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I am not sure how the nomination process works for the Emmys-- are they made by a committee or can stations or the reporter self-nominate -- but as a former journalist I can say that I would never vote to give an award to one-sided, naïve, seriously flawed reporting. Just because many papers and websites picked up his stories (and boy did they ever) does not mean its quality was good. IMO, everyone fell for the lurid "hospital kidnaps kid, parents go ballistic" theme and did little to ascertain whether the details of the story as reported by Beau were actually true.
Shame on the Emmy committee!
 
I don't know how the nominees are selected except that the Emmy organization seems to be like any trade or industry association, I think. Pay money, and you get to belong. Then, they promote the industry or trade or occupation and people give each other awards.

Anyhow, their website is at:

http://newenglandemmy.org/awards/

I thought the dinner was this month but its next month, so Beau needs people to vote for him. If I belonged, I wouldn't vote for him because I felt that the overall story he told, while interesting, seemed very one sided and lacking in depth.

I concur with everything you just said, sweetmom.
 
Thanks, I.B. Nora. Great minds think alike, as they say. :)

I am sure you've all heard the cliché about TV news: If it bleeds, it leads.

No actual blood in Justina's story, thank goodness, but Beau made the story so sensational that it was irresistible to the rest of the media.
Now, for sure, it is very difficult, if not impossible, to fairly report a story in which only one side can speak (and that side has an agenda and very few scruples about expressing it) and the other side is bound by law to NOT comment. Nevertheless, what he wrote and the way he wrote it was unfair to BCH, which could not fight back and reveal the facts about Justina's condition AND the parents' behavior, though they did get to talk to the judge confidentially about how hysterical and confrontational they were/are, and that was in the transcript of his ruling.
But by that time, the "kidnap" story was firmly implanted in the public's mind. And once that happens, there is little hope of changing those minds.

Yet I do have some hope that when the 2 Mass. reps conduct their "investigation," more facts --- not spin, real facts -- will come out that will finally, after all this time, provide some balance.
IMO, the Pelletiers should be careful what they wish for.
 
17th birthday pictures have been posted to the FaceBook site. One thing that stands out is the fact that Justina still has the NG tube in place. Generally, NG tubes are used short term for patients with eating/feeding issues. Usually they remain in place for no more then 4 to 6 weeks - 8 at a maximum. The risks of side effects/injury/infection are far too high for long term use. (Justina has been pictured with an NG tube in place since her release from CHOP in December. The only time she did not appear to have it was the pictures when she was hospitalized in early April.). Patients needing longer feeding/nutritional support are generally given another type of feeding tube like a PEG or JG tube. In some cases, a patient may insert and remove an NG tube at home when they only need nutritional support sporadically or during flare ups of whatever digestive disorder they are battling. I do not think this is the case with Justina as she has (almost) always been photographed with the tube in place, and because the reason for the DCF complaint from TUFTS was the family's refusal to insert a feeding tube at home. Are they using the feeding tube as a sympathy ploy? Do her doctors know that she is still using an NG tube? What they are doing with this young woman medically makes no sense to me.
 
annahanna said:
17th birthday pictures have been posted to the FaceBook site. One thing that stands out is the fact that Justina still has the NG tube in place. Generally, NG tubes are used short term for patients with eating/feeding issues. Usually they remain in place for no more then 4 to 6 weeks - 8 at a maximum. The risks of side effects/injury/infection are far too high for long term use. (Justina has been pictured with an NG tube in place since her release from CHOP in December. The only time she did not appear to have it was the pictures when she was hospitalized in early April.). Patients needing longer feeding/nutritional support are generally given another type of feeding tube like a PEG or JG tube. In some cases, a patient may insert and remove an NG tube at home when they only need nutritional support sporadically or during flare ups of whatever digestive disorder they are battling. I do not think this is the case with Justina as she has (almost) always been photographed with the tube in place, and because the reason for the DCF complaint from TUFTS was the family's refusal to insert a feeding tube at home. Are they using the feeding tube as a sympathy ploy? Do her doctors know that she is still using an NG tube? What they are doing with this young woman medically makes no sense to me.
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Much as I think any lawsuit to be filed against BCH by the Pelletiers would be ill-advised, if it meant that Justina's complex medical records would be made public, it might be worth doing. None of us, neither those who support the family or those who feel they are at fault, really has enough solid information to confirm our intuitions. But I will say that most of the opinions derived from the medical information (and personal experience) presented on this website seem logical and believable.
In a related note, the family is still facing bankruptcy proceedings, with incremental notices of hearings and such having been made by a judge in May. But their home is not listed as a pending foreclosure at this time.
 
If they are truly planning to file a malpractice claim, they better already be working with an attorney. The MA statute of limitations runs 3 years from the date the malpractice was first discovered or made known. Lou has been threatening a malpractice action due to this alleged mistreatment since February 2013. There are 9 months left. The clock is ticking......

I wonder if the records can be sealed in this type of civil suit because she is/was a minor when this started?
 
annahanna said:
If they are truly planning to file a malpractice claim, they better already be working with an attorney. The MA statute of limitations runs 3 years from the date the malpractice was first discovered or made known. Lou has been threatening a malpractice action due to this alleged mistreatment since February 2013. There are 9 months left. The clock is ticking......

I wonder if the records can be sealed in this type of civil suit because she is/was a minor when this started?
Click to expand...

Thanks for this reminder on the timeframe for a lawsuit. IMO, it will never be filed, for 2 main reasons: the family already has been advised, IMO correctly, that they will lose and they really do fear that medical information and details about how much responsibility they (not BCH) bear for Justina's long stay there would be made public, which could cause them to lose supporters and donations.

But that is an important question you raise about what information can legally be offered in open court when a minor is involved. Perhaps one of the lawyers who comment on this site could answer that one.....
 
After looking at the pix of Justina and her birthday cake again, I note that she is in her pajamas, which IMO, means she is still spending a lot of time in bed.
It's been a very long time since I turned 17, but I recall it well enough to say that no healthy 17-y-o wants to spend her birthday wearing pajamas and an NG tube. or to be photographed doing that. Very sad.
It seems that the recent surgery, wherever it was done and whatever reason it was done for, still has not solved her health issue.
 
Less than a year ago, when she came home, she was glowing and active and bouncing around in the pool, throwing out pitches at baseball games and attending parties, traveling and going on tv, etc. After a year and a half out of her house and receiving treatment, she was in pretty good shape. What happened over the last several months?
 
Morag said:
Less than a year ago, when she came home, she was glowing and active and bouncing around in the pool, throwing out pitches at baseball games and attending parties, traveling and going on tv, etc. After a year and a half out of her house and receiving treatment, she was in pretty good shape. What happened over the last several months?
Click to expand...

The snarky answer to "what happened?" is that she left the care of BCH, which, as shown by what you point out, actually helped her and went back under the home care of her family, which within just a few months led to various new hospitalizations and at least one surgery, and which, IMO, has set her back, way back to where she was before entering BCH.

That's the snarky answer, but it is also, IMO, the logical and correct answer.

But try convincing the loyal-to-a-fault supporters of the family who post on the Miracle site. There are none so blind as those who will not see.
 
You may recall that Beau Berman, formerly of Channel 61 in Hartford, was nominated for a New England Emmy for his (IMO) sensationalistic coverage of the Justina story, the report that kicked off the myriad of hysterical "kidnapping" follow-ups. Well, he did not win an Emmy.
But the folks at WCVB TV in Boston did win one in the Health category for their coverage. I never saw it, so I cannot say whether it was more balanced than what Beau reported. I sure hope it was.
 
I'll try to find time to watch it tomorrow. Thanks for the link.
Two quick responses to what you said:

I know the Pelletiers kept calling it "flu," but I recall reading a quote from Linda P. saying that they initially took Justina to Connecticut Children's Medical Center before BCH, because she had "the flu"....but after 4 days they took her out of that hospital "because they could not make a definite diagnosis." So it was not flu...they surely would have been able to pinpoint that. Also, her symptoms at the time as described by Linda were not flu-like: she could not walk, or eat, or swallow easily or speak coherently. I've had the flu: those are not the symptoms. What continues to annoy me is that so many reports kept saying Justina had the flu....with no evidence of that beyond the family's assertions.

Also, in all the interviews, they said they took her to the BCH emergency room because they said Dr. Korson of Tufts said they should see Dr. Flores, the Tufts doc who had move to BCH. I don't recall any quotes about insurance being a factor. And we still don't know if Dr. Korson simply meant "make an appointment with Dr. Flores," rather than "hire a private ambuance to go from Hartford to BCH in a snowstorm on a weekend night without checking to see if Dr. Flores was at the hospital or even on call.
If the Emmy-winning report repeated the family line on those two points without any confirmation, then its reporting was just as sloppy as Beau's.
 
I just watched the piece again, its only about 8 minutes long and was produced and aired on the occasion of Justina's ordered release and return to her family.

Its a very short summary of the story and not meant to be investigative journalism, imo.

The part about the flu was mentioned because prior to that Justina had been assumed to have "mito" like her older sister Jessica and the flu is very difficult on people with "mito".

The reporter said that Justina's father said that the delivery to the emergency room was for insurance purposes. (And, as an aside, we know that insurance coverage has played a huge role in this whole story all along.)

The program was in the category HEALTH/SCIENCE PROGRAM/SPECIAL and tied with another piece from the same station.

I really couldn't guess why it stood out as deserving of a regional Emmy but, there it is.

Beau Berman's work was in the CONTINUING COVERAGE/No Time Limit Category.
WCVB won in that category as well.
 
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