DC - Justina gets standing ovation from Congress

[Morag]

The article mentions that she was eating heartily when she returned home last fall, and I do recall how plump she looked. The film of her bouncing about in the family pool was very revealing. Now, after only a few months at home, she is in worse shape than ever....

 

[jjenny]

Why are her health issues still discussed in the media? Why does anybody need to know what condition Justina's intestines are and where she's treated. Give the girl some privacy finally... Whatever is going on with her, it's not a public health issue. JMO.

What do the parents hope to gain from keeping her in the news?

And yet people here complain day in and day out that parents or whoever runs the miracle website have not been forthcoming with information about Justina's health status.
Seems like her family are damned if they do and damned if they don't.

 

[jjenny]

The article mentions that she was eating heartily when she returned home last fall, and I do recall how plump she looked. The film of her bouncing about in the family pool was very revealing. Now, after only a few months at home, she is in worse shape than ever....

There are quite a few conditions where a patient has a period where he/she appears better and then has a relapse/episode/crisis, etc. It's a well known phenomena.

 

[Hiandmighty]

That's true, but they said BCH did experiments on her, etc, and that BCH harmed her, but she looked darn good coming out of BCH and within a month, after being in the care of her mother only, she went on this last episode of declining.

The Ma social workers did have a question about the family situation regarding her illness....

People are going to wonder.....

 

[Donjeta]

And yet people here complain day in and day out that parents or whoever runs the miracle website have not been forthcoming with information about Justina's health status.
Seems like her family are damned if they do and damned if they don't.

There are different viewpoints about almost everything... I don't think I've been complaining about lack of health updates...? If you ask me they should shut down the website altogether. Justina has been "freed" from Boston Children's, so it's served its purpose and the only thing it's doing now is invading her privacy. It's imo very doubtful that her health is going to improve because she gets attention from strangers by being sick.

 

[Hiandmighty]

From the case history: "It reads:

“Due to concerns regarding Justina’s regressive behavior changes around her family, the multiple medical procedures and care episodes she has been through … and both parents’ resistance towards recommended treatment plans for Justina … a child protection team was convened.”"

http://foxct.com/2013/11/19/hospital-holds-west-hartford-girl-for-9-months-after-parents-argue-diagnosis/


(Note the photo of the mom getting taken away on a stretcher after falling out dramatically when the hearing didn't go their way...)

 

[sweetmom]

And yet people here complain day in and day out that parents or whoever runs the miracle website have not been forthcoming with information about Justina's health status.
Seems like her family are damned if they do and damned if they don't.

But what we have seen is that the parents do not hesitate to post about her condition IF they think it supports their version of the story or will serve to get them more support (including financial support) from their IMO none-too-bright followers. IMO, they should be damned for doing that.

Remember, they have said she had her teeth broken, was attacked in the shower, was physically tortured, was paralyzed by BCH, was subjected to secret illegal experiments, was at death's door, had the mind of a 6=year-old, was kept from any education and religious services (BCH offered tutoring and a priest to visit her, and likely the two rehab centers did as well). None of their hysterical accusations have been proven true. They are not to be trusted, IMO.

 

[sweetmom]

There are quite a few conditions where a patient has a period where he/she appears better and then has a relapse/episode/crisis, etc. It's a well known phenomena.

But she did not relapse to "can't walk, can't talk, can't eat solid food, can't swallow" during the 16 MONTHS at BCH and the 2 rehab facilities. In fact, all those conditions improved or ended when she was there. But within just 10 WEEKS of being home again, all those conditions that she had before entering BCH were back, even worse. IMO, being at home has NOT helped her medically; it has made her worse.

 

[jjenny]

But she did not relapse to "can't walk, can't talk, can't eat solid food, can't swallow" during the 16 MONTHS at BCH and the 2 rehab facilities. In fact, all those conditions improved or ended when she was there. But within just 10 WEEKS of being home again, all those conditions that she had before entering BCH were back, even worse. IMO, being at home has NOT helped her medically; it has made her worse.

How do you know any of that? Per what she said, she had several episodes of pneumonia during that time. Furthermore, she couldn't walk during that time at all. She still can't.

 

[i.b.nora]

My opinion is she does not walk because she does not want to be an ice skater.

 

[Hiandmighty]

My opinion is she does not walk because she does not want to be an ice skater.

Interesting. Even Keith Ablow mentioned the ice skating thing:

Since Linda Pelletier was a figure skater (as was Justina, prior to her becoming a ward of the Commonwealth of Massachusetts), I wondered whether Linda had been a very powerful proponent of that sport. But hoping to recreate your athletic prowess in your daughters is pretty common, and hardly a reason to be deemed unable to parent one of them.

http://www.foxnews.com/opinion/2014/04/17/my-dinner-with-family-justina-pelletier/

 

[sweetmom]

How do you know any of that? Per what she said, she had several episodes of pneumonia during that time. Furthermore, she couldn't walk during that time at all. She still can't.

Well, let's see what we know from looking at photos and reading stories:

Eating: Photos show her looking healthier, as if she gained some weight, by the time she returned home and attended her "sparkle" party. Reports said she was not given a feeding tube at BCH, so therefore, she could and did eat. The photos of her at Yale-NH do not show IV or feeding tubes.
Swallowing: If she was eating normally, then she could swallow while at BCH/rehabs and upon returning home. Otherwise, IMO, she would have starved to death. But now she is on IV feeding. So she could eat and swallow while under state custody in Mass., but soon after returning home she lost that ability.
Talking: When Linda Pelletier took her to BCH, she claimed Justina could not talk, or talk coherently. When she left Mass., she was taken to Washington where she spoke to a group of Congressmen/women. So she could not talk prior to BCH but could talk quite well after being there.
Walking: Media stories point out she could not walk while at home or school prior to BCH. She cannot (or will not) walk now, either. But claims that BCH paralyzed her seem totally bogus, as she could not walk when she was admitted. However, via the family's very own video, on the Miracle site, she appears to be standing up in the family pool and throwing toys to the dog. I doubt she could do that if she was paralyzed from the waist down.. . .she'd fall over. So again: better right after BCH, worse now.
Pneumonia: I have seen no reports that Justina had pneumonia while in Mass., not in
the media or quotes from Justina. And given that Lou told reporters Justina has the mind of a 6 year old, IMO it is hard to believe she would even know if she had something as complex as pneumonia. Are there links showing quotes from her or the family about pneumonia?
Skating: lol, i.b. nora!

 

[sweetmom]

Interesting. Even Keith Ablow mentioned the ice skating thing:



http://www.foxnews.com/opinion/2014/04/17/my-dinner-with-family-justina-pelletier/

We've all seen those ghastly stage moms on Toddlers and Tiaras trying to live through their poor little kids. IMO, Linda might have been doing the same re: skating. Also, there are stories and posts that claim Justina was in a skating competition. No. It was a recital, like a dance academy recital, where one of her sisters works. It was not a competition, which would require far more skating skill than she has, IMO.

 

[jjenny]

No, reports don't say she wasn't given a feeding tube at BCH. Reports say the opposite. She was in fact given a feeding tube at BCH early on after arriving there. It was apparently removed at some point of time, but she was put on a feeding tube not that long after arrival.

 

[jjenny]

We've all seen those ghastly stage moms on Toddlers and Tiaras trying to live through their poor little kids. IMO, Linda might have been doing the same re: skating. Also, there are stories and posts that claim Justina was in a skating competition. No. It was a recital, like a dance academy recital, where one of her sisters works. It was not a competition, which would require far more skating skill than she has, IMO.

There are not that many people that are able to compete at the elite level. I have no idea what that has to do with anything. She was able to balance herself on skates, which is a lot more than she is able to do now.

 

[sweetmom]

No, reports don't say she wasn't given a feeding tube at BCH. Reports say the opposite. She was in fact given a feeding tube at BCH early on after arriving there. It was apparently removed at some point of time, but she was put on a feeding tube not that long after arrival.

This actually confirms the point I was trying to make: even if she had a feeding tube for a while at BCH, she was taken off it, which means she was eating normally. And common sense tells us that she never would have been sent to two different nonmedical rehab facilities if she still needed the tube. So, by the time she left Massachusetts, she was eating, not being tubed. And now she is being fed by IV. So IMO, her condition deteriorated after she went home and then to Yale-NH.

 

[sweetmom]

There are not that many people that are able to compete at the elite level. I have no idea what that has to do with anything. She was able to balance herself on skates, which is a lot more than she is able to do now.

It has to do with the many misleading stories that have been written about Justina, based on things the family has told reporters and which they never corrected in subsequent stories. Yes, she could wear a Santa costume and balance herself on skates. But soon after, she could not walk from her classroom down the hall to the cafeteria and soon was using a wheelchair. IMO, it is reasonable to wonder if the effort she put into being in the skating recital weakened her. And again, IMO, it is misleading for the articles to suggest, as many have, that she was a champion skater until BCH got a hold of her. IMO, those incorrect stories were part of the effort to demonize BCH. That's what it has to do with.

 

[annahanna]

The articles in the Hartford Courant and the Boston Globe both appear to be dancing around the question of whether or not Justina was actually transferred from Y-NH to CHOP via hospital to hospital transfer or simply discharged and taken to CHOP by her family.

"A Yale-New Haven spokesman, Mark Dantonio, confirmed that Justina was released from the hospital Monday but declined to give details on her care, citing patient confidentiality. A spokesman for the Children’s Hospital of Philadelphia, Dana Wiedig, declined to comment on whether Justina is a patient there. However, a call Friday to the hospital’s general line confirmed that it has a patient with the name of Justina Pelletier."
https://www.bostonglobe.com/metro/2...a-pelletier/u4JXzmt5YsmWhYk95za2aK/story.html

"Last week Justina's family took her out of Yale-New Haven and had her admitted to The Children's Hospital of Philadelphia for further testing."
http://www.courant.com/news/connect...hiladelphia-hospital-1208-20141207-story.html

This does not read (to me) like a hospital to hospital transfer. It sounds like her parents decided to have her discharged and then took her to Philadelphia. If they showed up in the CHOP ER with a child writhing in pain, complaining of an inability to walk, and unable to eat - she would have been admitted. They would hospitalize her even if a previously requested transfer had not been approved. (To me) this would explain the social media silence on the "transfer" when a full bells and whistles celebration would have been expected.

The parents have shown in the past that they are willing to manipulate the system to get what they want. I hope that I am wrong in my belief that they just presented themselves at CHOP expecting something different to happen. Lou is again showing his or the family's belief that Justina is just too "complicated" for doctors to understand. CHOP is a fabulous hospital. However his quote in the Globe that "they are the mega-center of a lot of things" sounds like like a prescription for disappointment. Even though he claims a positive relationship with the clinicians at Yale New Haven, his quoted statement in the Courant about them not having the "expertise" to adequately care for his daughter is very telling. Equally telling is his quoted claim in the Globe that his daughter's problems are 100% medical with no psychological involvement at all. I wonder how many gaskets he is going to blow when the CHOP team assesses her psychological health? It is inevitable that the very large Psychiatry and Behavioral Health department will be brought in to consult on and participate in Justina's care. I wonder if the Pelletiers know that the Child Protection Team at CHOP is well regarded, firmly entrenched, and larger then the Child Protection Team at BCH?

"Justina's father, Lou Pelletier, said Sunday that the staff at Yale-New Haven "just didn't have the expertise to deal with" her deteriorating condition.
http://www.courant.com/news/connect...hiladelphia-hospital-1208-20141207-story.html

"It’s 100 percent medical,” said Pelletier; he and his wife, Linda, remain furious at Boston Children’s and the state’s child-protection agency for accusing them of medical child abuse. “There’s no psychological cause. Never has been and never is.”
https://www.bostonglobe.com/metro/2...a-pelletier/u4JXzmt5YsmWhYk95za2aK/story.html

Just My Opinion

 

[annahanna]

And yet people here complain day in and day out that parents or whoever runs the miracle website have not been forthcoming with information about Justina's health status.
Seems like her family are damned if they do and damned if they don't.

Plenty of people have expressed concern that the Pelletier family asks for support, prayers, advocacy, gifts and money while being less then forthcoming about the true story of Justina's health. They have continually demonized an outstanding hospital, made some truly outrageous claims, and interfered with the ability of other patients to obtain medical care in peace and privacy. Outside of her family and closest friends, I sincerely doubt that many people are waiting with baited breath to hear about her medical condition. The only reason most people care is because her parents put it in he public domain and associate her ill health and occasionally "imminent death" with a well regarded medical institution.

I can only speak for myself, but as the parent of a chronically ill teenager, I am concerned about what appears (to me) to be a scam perpetrated on the public. The continued solicitation of gifts and financial compensation is troubling. Although I have no belief that it will ever actually become law, the introduction and advocacy for "Justina's Law" is disturbing because, as it is currently written, such a law would only serve to harm seriously ill foster children and would not have prevented Justina's situation. Outside of her family's imagination, there is nothing to suggest that custody action was taken for any reason but the protection of a sick and vulnerable minor child - one who's own parents describe as having a mental capacity years below her chronological age. BCH has repeatedly stated that Justina did not take part in any form of medical study or experimentation while a patient there. In fact, according to the National Institutes Of Health, Boston Children's was not involved in any medical studies related to Somataform Disorders during the time period that Justina was a patient. As a parent of a patient who has participated in medical studies at BCH, I can confirm that my child was always asked (outside of my influence) if he was interested and willing to participate. Since age 14 he has been asked to co-sign the consent forms. A research study in Ohio was handled similarly.

I, for one, would be absolutely thrilled if Justina magically got better and the Pelletier's quietly faded into the woodwork - never to be seen or heard from again. However, since they chose to put themselves out there in the public eye, they opened themselves up to scrutiny and potential criticism. By asking for support and advocacy, they are also asking for people to investigate the validity of their story and, if they choose, to potentially support the other side. As a frequent visitor to BCH - and a number of the same doctors and PTs/OTs that treated Justina, I know how unbelievable their story is and I choose to support BCH.

Just My Opinion.

 

[annahanna]

"Lou Pelletier said he and his wife are working with a lawyer on a possible lawsuit against the Department of Children and Families and Boston Children’s, accusing them of harming their child physically — and ultimately psychologically — by keeping her away from home for 16 months."
https://www.bostonglobe.com/metro/2...a-pelletier/u4JXzmt5YsmWhYk95za2aK/story.html

The continued threats of a lawsuit against MA DCF and BCH have almost become laughable. As a state agency, DCF has a great deal of protection from a lawsuit. If they were acting in the best interests of the child, and the judge's rulings support that view, a lawsuit for simply taking custody would be a non-starter. The family would have to prove that Justina was mistreated while under DCF care. Since she was returned to the parents healthier then she was when the parents lost custody, that would be very difficult to prove. BCH can not be sued for reporting their concerns of medical child abuse to DCF. As a mandated reporter, they were obligated to report their legitimate concerns. The fact that numerous court hearings resulted in the family court judge awarding custody to the state absolves BCH of any possible allegations of wrongdoing in their reporting. The only remaining avenue for a lawsuit would be medical malpractice. Again that would be very difficult to prove. With the parent's documented history of doctor/hospital/diagnosis shopping, their history of conflicts with medical providers, and the simple fact that Justina left the care of BCH in better health then she arrived, the path to a medical malpractice award will be nearly impossible. DCF was the "parental" medical decision maker in Justina's care. The simple fact that the Pelletier's disagreed with the medical decisions does not make them wrong and does not imply guilt of malpractice on the doctors/hospital's part. Once again, she left there in better shape then she arrived. If they do intend to sue, they should plan to do so soon. The statute of limitations for filing a medical malpractice claim in MA is 3 years from the date the incident became known. Lou and Linda Pelletier began threatening a lawsuit within days of Justina's admission to BCH on February 10, 2013. That would give them until February 2016 to file. By my count, 22 of a possible 36 months are gone.