DC - Justina gets standing ovation from Congress

[jjenny]

It's online.
Apparently she had a surgery in CT (they didn't say what it was for) and is now back home.
http://foxct.com/2015/02/15/justina-pelletier-facing-more-medical-problems/

 

[sweetmom]

The only news in this report is that Justina had some kind of surgery at CT Children's Medical Center in Hartford, but no details on what or when this was done (was it before her stay at Yale-NH and Children's Hospital of Philadelphia? Not known.)
The family, to the surprise of no one, is sticking to their story that it was Boston Children's Hospital that caused Justina's current problems. They fail to mention that she had all these problems before entering BCH, that the family could have had her home a full year before her actual release but refused to abide by the court orders and/or sabotaged possible placements in step-down facilities and that she seems worse now than she was while at BCH.
No mention of lawsuits or Justina's Law, both of which, IMO, are off the table for lack of legal support.

 

[SeeAlice]

Was Justina's latest "surgery" to place that NG tube? JMO - it's tragic that she is deprived of one of life's most essential pleasures: the experience of food.

http://foxct.com/2015/02/15/justina-pelletier-facing-more-medical-problems/

IIRC, "mito" is a metabolic disorder that affects the body at a cellular level.
For it to effect the metabolism of her GI tract, too, seems a tad strange to me.

From the Mito website:
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934627/k.3711/What_is_Mitochondrial_Disease.htm

 

[annahanna]

Was Justina's latest "surgery" to place that NG tube? JMO - it's tragic that she is deprived of one of life's most essential pleasures: the experience of food.

SBM
Unless the family is misrepresenting it, placement of an NG tube is not a surgical procedure. In fact, a patient or parent can be taught to insert and remove an NG tube at home on their own. I know college students who place NG tubes in their dorm rooms to run "feeds" overnight and remove them in the morning to go to class and live their lives. It is not "normal" but a few kids with Gastroparesis and other similar disorders do it every day.

I believe (IIRC) that the original DCF complaint filed by Tufts Hospital was related to Linda's refusal to learn to place an NG tube and handle tube feeds at home instead of rushing Justina into the hospital. I do think it is interesting that both the Christmas pictures and Valentines Day pictures both showed the NG tube in place. NG tubes are not normally used long term due to the risks of infection, irritation or damage to the sinuses, throat, esophagus, and stomach. There can be other complications as well. I wonder if it is actually used sporadically and they have learned to place and remove the tube?

 

[stormshine]

I remarked on this earlier, but in the pictures with Meghan Trainor she definitely looked like she'd just had surgery. She was wearing a hospital gown and seemed extremely puffy (I only connect this with surgery from personal experience as a patient). So that statement from the parents seems legit to me. Is it possible the surgery was diagnostic in nature, such as that muscle biopsy that hadn't previously been performed?

 

[annahanna]

I am not surprised that the family feels like they are having difficulty finding doctors to care for Justina. On one hand, any doctor or medical facility is going to be understandably cautious knowing the family's reputation. On the other hand, I suspect that they are so stuck on what they believe her problem is (Mito) that they are unwilling to entertain any other opinion. I think it is pretty clear that BCH, Yale New Haven, and CHOP would have each tested extensively for every possible variant of Mitochondrial Disease. Since there was no grand proclamation that they were right and BCH was proven wrong, I am guessing that Yale New Haven and CHOP both refuted the Mito diagnosis. Considering they stopped seeing Dr Korson at least 2 to 3 months before the Tufts Mito Clinic closed, I would guess that he also let them know that Justina did not have Mito.

This is just my opinion, but eventually this family is going to have to place their trust in Justina's doctor(s) and accept what her doctors are likely telling them. Her problem is (likely) not Mitochondrial Disease.

 

[annahanna]

I remarked on this earlier, but in the pictures with Meghan Trainor she definitely looked like she'd just had surgery. She was wearing a hospital gown and seemed extremely puffy (I only connect this with surgery from personal experience as a patient). So that statement from the parents seems legit to me. Is it possible the surgery was diagnostic in nature, such as that muscle biopsy that hadn't previously been performed?

It is possible that she had an undisclosed surgery at CHOP, but I think it is unlikely. The news report identified the hospital where her "recent" surgery was performed as CT Children's Hospital. Despite the Pelletier claims of the seriousness, risk, and pain associated with a muscle biopsy, it really is not a big deal procedure. Generally it is done on an outpatient basis with the patient fully conscious. Personally, I can not imagine that a muscle biopsy was not done during the months that Justina was inpatient at Boston Children's.

 

[stormshine]

Interesting that th news report mentioned surgery at Connecticut Children's. That means they went to three different hospitals (including Yale and CHOP). That definitely looks like doctor shopping to me.

 

[annahanna]

She was also seen at least once by Dr Korson at Tufts during that time. (Prior to whatever falling out they had with their much praised "expert.")

 

[sweetmom]

IIRC, they had taken Justina to CCMC for that mysterious "flu," and according to what Linda P. told the Globe, a couple of days later took her home because CCMC could not diagnose her (so it was not the flu.) Then a day or so later came the midnight snowstorm ride to BCH. We still do not know if Dr. Korson told them to make that dangerous trip on a weekend night without arranging to meet Dr. Flores there in a direct admission, or if Korson simply told them they ought to make an appointment to see Flores sometime soon. That info would be valuable to know for anyone trying to comprehend the truth about this convoluted story.

In any case, in slightly more than 2 years, Justina was treated by Tufts, then CCMC, then BCH, then Yale-NH, then CHOP, then CCMC again. And is worse than ever. No wonder hospitals are leery of taking her on as a patient. If this is not doctor shopping, it sure could be seen that way.

 

[annahanna]

In any case, in slightly more than 2 years, Justina was treated by Tufts, then CCMC, then BCH, then Yale-NH, then CHOP, then CCMC again. And is worse than ever. No wonder hospitals are leery of taking her on as a patient. If this is not doctor shopping, it sure could be seen that way.**

SBM
** That we know of ... I wonder how many more doctors/clinics she has visited that have not been publicly announced?

The family better be careful which clinics they characterize as incompetent - they are going to run out of treatment facilities. According to the Mitochondrial Disease Advocacy group Mito Action, 5 Mito clinics have closed down in the past 12 months. http://www.mitoaction.org/blog/mito...onwide-closures-mitochondrial-disease-clinics There are less then 3 dozen Mito specialty clinics left in the US.

 

[sweetmom]

SBM
** That we know of ... I wonder how many more doctors/clinics she has visited that have not been publicly announced?

The family better be careful which clinics they characterize as incompetent - they are going to run out of treatment facilities. According to the Mitochondrial Disease Advocacy group Mito Action, 5 Mito clinics have closed down in the past 12 months. http://www.mitoaction.org/blog/mito...onwide-closures-mitochondrial-disease-clinics There are less then 3 dozen Mito specialty clinics left in the US.

I wonder too. Various stories in the media and many posts and comments say Justina was seeing a child psychologist (or perhaps psychiatrist) in Connecticut before the BCH brouhaha began. And we know that several health providers here did report the family to DCF about their behavior in relation to her illness, and there were investigations that did not lead to charges. What we do not know is whether those investigations were thorough and accurate in their conclusions. IMO, it would not be the first time a DCF investigation proved inadequate.

I also wonder why so many Mito clinics are closing. Are they losing funding or support from hospitals because of poor service or faulty diagnoses? I guess I should read that link!

 

[sweetmom]

The Miracle website has the first mention of Justina's Law in a long time. The proposed legislation, which IMO was based on the false premise that BCH did some kind of super-secret illegal experiments on Justina, died when the 113th Congress ended. So far no congresscritter has re-proposed it, but the Miracle site says that is being worked on....but gives no details.
There also has been no mention in quite a while about the supposed lawsuit they will launch against BCH, Mass DCF to bankrupt the hospital and bring the state to its knees.
I seem to recall discussion on this site about there being a time limit to file that kind of suit...does anyone remember the details on that?

 

[stormshine]

I wonder. Civil suits are generally matters of public record, even when involving minors, correct? They might be hesitant to put everything out there. Correct me if I'm wrong, lawyerly types.

 

[sweetmom]

I wonder. Civil suits are generally matters of public record, even when involving minors, correct? They might be hesitant to put everything out there. Correct me if I'm wrong, lawyerly types.

Very good point. IMO, the last thing this family wants is to have the actual medical records and the details of their behavior made public. IMO it would devastate their claims and show them to be at fault. IMO all their bluster about lawsuits was just that -- bluster -- to continue to gain sympathy and donations. There has been no talk of prominent lawyers like Dershowitz (who now has problems of his own) taking their case for about a year or so, likely because any lawyers who took a good look at their specious claims declined to represent them.

 

[annahanna]

In MA, patients or parents of patients over age 6 must file a malpractice suit within 3 years of becoming aware that (possible) malpractice occurred. Since the Pelletiers' started claiming medical malpractice as soon as she was hospitalized at Boston Children's, they will have to file a malpractice suit by mid February, 2016. (Based on hospitalization date of February 10, 2013.) The only exception might be if they discovered concrete proof of unauthorized medical experimentation at a later date. Since there is no logical reason to believe that BCH did any sort of experimentation, that is highly unlikely.

This is just my opinion, but if they truly were in discussions with a legitimate malpractice attorney, that attorney would have advised them NOT to file the traffic accident lawsuits as it is more difficult to proceed with a civil action with a client with a multiple lawsuit history and the traffic suits are unlikely to win large settlements. Jennifer's suit was filed 7/26/13 and currently listed as proceeding. Linda's suit (including Jessica and Julia) was filed 2/18/14 and is scheduled to go to trial 9/11/15.

They have also threatened to sue BCH and some individual practitioners for bringing DCF into the case. Under MA law, it is not possible to sue a mandated reporter for a legitimate report to DCF. Regardless of their opinion of legitimacy, the fact that the court found reasonable cause to remove Justina from her parents' custody for 16 months automatically protected the mandated reporters. They have also threatened to sue DCF, but since they were doing their jobs and were backed up by the court's decisions, that too would be difficult to impossible.

 

[annahanna]

I noticed a post on the Miracle site that Justina's law would have to be reintroduced during the current congressional session because it died at the end of the last session. No response to that yet. It will be interesting to see if that comment gets deleted.

 

[sweetmom]

Yes, that was the post, made by a supporter, that I was referring to. There were dozens of co-signers to the original Justina's Law, which was championed by former US Rep Michele Bachmann, including, to my chagrin, my own Hartford-area congressman John Larson (IMO, his staff never did a lick of research into the Pelletier story before he signed on. He probably would reflexively support any law that purported to aid constituents of his.)

It certainly is possible that one of those reps could re-introduce the bill, but given ex-Rep Bachmann's enduring legacy as a far-out-there conspiracy theorist, maybe they're just gonna let it stay dead.

 

[sweetmom]

Thanks for this detailed and very useful recap of the ins and outs of filing the type of lawsuit the family keeps mentioning.

 

[Morag]

Thanks for this detailed and very useful recap of the ins and outs of filing the type of lawsuit the family keeps mentioning.

And since there are so many other lawsuits pending against the family- they owe many people/companies money- they may find it difficult to get an attorney to represent them.