UPDATE: 15-year-old girl held at Boston Children’s Hospital against parent’s will still not allowed to go home

Last month, Glenn shared the stunning story of Justina Pelletier, a 15-year-old girl who has been stuck in a hospital for the last nine months after the medical facility took custody of her when her parents argued against her diagnosis.

The hospital claims that the parents over-medicalized the girl, leading them to take custody. The parents have provided ample evidence that every time they’ve taken their daughter to the hospital or to the doctor, they did exactly what the doctors told them to do. But now the family finds themselves in a bitter dispute to get their girl home. It’s been ten months since they lost custody, and following the latest court hearing, Justina was still not allowed to go home.

On radio this morning, Cristy Balcells, executive director of Mitoaction.org, who is working with the Pelletier family to help them bring their daughter home, joined Glenn to discuss how Justina is doing and how people can help the Pelletier family. Learn more about Christy’s organization and how you can help HERE.

Listen to the interview below. Applicable audio begins around the 1 hour 34 min mark:

Read a transcript of the interview below:

BALCELLS: Thank you so much, Glenn, and thank you so much for helping to bring this issue to this level of awareness. It’s really heartbreaking.

GLENN: This is — this is not — this is not the only case, and we’ll get into that. But you have — since we started talking about it, you’re getting calls from people all over the country saying, “This is happening to me too.”

BALCELLS: It’s overwhelming. It’s phenomenal. You know, we had high hopes yesterday because so many people have actually come forward to share their story and we felt like we had such a huge show of support from families, both in Boston and around the country, particularly who have had this type of experience with a child with a rare chronic disease at a children’s hospital, where everything that the parent was doing was called into question and the parent was left powerless and was basically accused of harming the child when they were just trying to do the best they could to make their child better.

GLENN: I tell you, this is — this is criminal what’s happening. Cristy, explain — explain, if you can. Tell quickly the story of what happened yesterday and what this means for the family.

BALCELLS: Well, here’s what happened yesterday. Nothing. It’s so incredibly frustrating. We had really — and thought that we were going to see some progress because what else could we decide after 10 months of holding this girl captive in the hospital. Really, you need another week to get some more information? I’m flabbergasted and heartbroken for this family, and I speak on behalf of I think the entire community of parents who have children with chronic diseases and mitochondrial disease when I say that. We’re horrified, and it really makes me lose faith in the legal system. I already had lost faith, I think, in our hospitals and in our medical system. As you know, I have a child who has mitochondrial disease as well, and it’s an uphill battle. But to — I had a little bit of faith left that the legal system would realize that if the child had been in the hospital for 10 months and they couldn’t make her better while she was away from her parents, then maybe that original diagnosis should be reviewed again. And this little girl should be home with her family.

GLENN: Okay. Hang on just a second.

BALCELLS: Instead they told them, they said, come back next week. We’ll talk about it some more.

GLENN: Okay. So it’s not that they haven’t made her better in 10 months. It is that she has actually gotten worse in 10 months, correct?

BALCELLS: She has gotten worse, and that’s probably one of the saddest parts of this story as well. So the family is terrified. They’re under such a strict gag order that the family is so afraid to open their mouth even to ask for support from the people who are reaching out to them to help because they think that if they even say one word saying how they feel that that is going to be used against them as a reason to prove that they’re negligent and that they won’t get their daughter back.

GLENN: This is criminal.

BALCELLS: That’s the first thing. The gag order is flabbergasting to me.

GLENN: This is absolutely criminal. I mean, if there was anybody in public office in the Northeast that I trusted, I would get them on the phone. But this is — this is crazy. How can a parent have a gag order and be told not to say anything? That’s their — it’s their child, for the love of Pete. How can –

BALCELLS: It’s their child. Since when did you lose your right to even be able to reach out to the people who are there saying “How can I help you” and you’re supposed to say “I’m not allowed to talk about it. My child is not with me. It’s almost Christmas and I’m not allowed to talk about it.” I mean, the devastation on this family is just — can you imagine having your child taken away from you?

GLENN: I have to tell you –

BALCELLS: I almost think it’s worse than the child dying because this is like a Purgatory that goes on forever.

GLENN: I have to tell you if I were the family, when this whole thing is over, I hope to God that they get the biggest damn attorney they can possibly find and sue this children’s hospital until their eyes bleed. This is the — this — because this is not the only case of this. Tell me about the doctor who is vested in — or maybe — you may not know this. The doctor up at this hospital that is vested in this particular disease that they’re trying to say the parents have inflicted on this young girl. Do you know this part of the story?

BALCELLS: The doctor at Tufts.

GLENN: No, the doctor at — the doctor at Boston Children’s who is vested in — yeah, who’s vested in the — what is the name of the disease that children’s hospital is saying that she has?

BALCELLS: Somatoform disorder, psychiatric disease.

GLENN: Yeah, it’s a psychiatric disease. And this doctor who is at Boston Children’s, this is — you know, she wrote her paper on this, this is her disease. And she is — every single time this has happened in the past, she’s been involved and she’s — I think she’s trying to make a name for herself.

BALCELLS: Well, you know, it’s kind of one of those positions, if your job is to be the naysayer of those things, you have to prove your position’s worthwhile, right? You have to create work for yourself. I mean, we see that all the time. I really don’t feel like any one doctor, though, can truly be held responsible for this. I think that this is just a horrific example of a broken –

GLENN: System.

BALCELLS: No one paying attention to common sense here, including the judge.

GLENN: So –

BALCELLS: I don’t understand.

GLENN: Okay. So Cristy, what can people do?

BALCELLS: So here’s what we’re trying to do as an organization. We’re mounting an advocacy campaign asking for donations to try to help this family mount an even larger legal response. And you can look at that at mitoaction.org/advocacy. And, you know, I think that the social media aspect is helping. I think that the national awareness and pressure from the media is helping. The family does feel that they are in a corner and they don’t know what else to do. So we hope that by showing our support nationally, we can make a difference. We are talking now and have reached out to the legislature to try to emphasize how unjust this is and to ask for some transparency. I find it really appalling that in all of this time, no one has asked Boston Children’s Hospital to be transparent with their decision to really, to make a statement and that it is always like the parent being crucified while the hospitals, you know, stands at the top of the mountain. I find that, you know, unspeakable, especially when in this case we’re talking about taxpayers contributing their money to pay for this girl’s ten-month hospitalization. Her family is not after money. They don’t want a dime. They want their little girl to come back home. This child has no parents right now. She hasn’t even been put into custody of, like, a family member or an aunt and uncle or someone who could at least be acting like a mom or a dad for her. She has no parent. She lives in a hospital room. Alone.

GLENN: And she is — she is in a psych ward, is she not?

BALCELLS: She’s in a psych ward at the hospital. With a guard.

GLENN: This is one of the –

BALCELLS: It makes you disgusted, right? It makes you sick.

GLENN: Oh, yeah. This is — this is the kind of stuff that, you know, you read about in the 19 — you know, from the 1950s and Sixties where you read about what they used to do to people who were, you know, crazy and they would lock these people up in institutions, and you watch them and you just turn away from it in disgust and you think, oh, thank God we’re past that. No, we’re not past that. No, we’re not past that. That’s what’s happening right here. We have a young girl who is sick. Her parents are trying to do the best thing for her. The State has decided they disagree with the parents and the State wins. What this is saying to you, America, is you don’t have a right of your own child. That child does not belong to you. That child belongs to the State. They’re allowing you to take care of that child unless they disagree and then the State takes. And this is not like, “Well, we’re just going to say Jesus at her at the top of the hour and hope that she gets better.” That’s not what this is. This is a child that was diagnosed with one disease at Tufts University. She goes in for something else at Boston Children’s. They decide that that’s — “We don’t agree.” They don’t have a right to another opinion? They have to take Boston children’s Hospital opinion and so because the parents said to hell with that; we’re taking our child. The hospital goes to the court and takes custody of the child and puts her in a psych ward. Meanwhile she could walk into the hospital — now nine months later the girl can’t walk.

BALCELLS: Correct.

GLENN: Because she’s not about treated, she’s not being treated for what Tufts University said she –

BALCELLS: For what she has.

GLENN: It’s such an outrage. Listen, here’s what I would like you to do. If you are able to donate any money, I would like you to go to mitoaction.org, mitoaction.org/advocacy and make a donation and help this poor family. This is a regular run-of-the-mill family. This is a family that is already — they are trying to do the right thing for their kid. This is not a crazy family, none of that stuff. I want you to go to mitoaction.org/advocacy so these people can hire a really good attorney, so they can have somebody on their side that is really giving them a defense. Let’s see if we can get this child home for Christmas. This is the biggest outrage. Go there and see if you can help out. Cristy, thank you so much and we’ll talk to you again.

  • Bonnie Somer

    Glenn if i were the parents i would go to u or FOX news and demand w/an attorney to get my child back ………………….I tell my kids not to go to the hospital and if so to make sure they can leave and never to go alone. SUE AND MAKE SURE U GET EVERY DIME THIS HOSP prison has. THAT IS THEIR CHILD I WOULD DRESS UP AS A DOC AND SNEAK MY KID OUT IF THAT WERE THE ONLY WAY OR I WOULD COME W/A LAW FIRM OF ATTORNEYS AND GET HER OUT W/A COURT ORDER OR WHATEVER IT TOOK.

  • http://www.artinphoenix.com/gallery/grimm snowleopard (cat folk gallery)

    This is criminal, and not just by the hospital, it is criminal from the courts, and from the government.

    How much longer will it be before the state decides to use force to separate a child from the parents over the least imaginable reason? And when will the state agents cross the line and wind up executing the parents in cold blood for protecting their children from state-sanctioned kidnapping?

  • http://www.youtube.com/watch?v=V8FvmesaxXg Sam Fisher

    Who needs rights when you got big Daddy government stepping in. This is a bunch of bull and a product of a liberal government.

  • landofaahs

    If there is any doubt at all, the parents should be given the benefit of the doubt. These power hungry people need to be civilly arrested and charged with kidnapping. I want jail time for all of them involved.

  • Anonymous

    No one stays on a psychiatric unit ten months without being drugged with non curative toxic psych medications. Are these parents allowed to know the plan of care for their child and what these doctors are doing? If not and they drugging this child with psychiatric poison this is beyond criminal – this is torture and terror!!

  • Anonymous

    “BALCELLS: I almost think it’s worse than the child dying because this is like a Purgatory that goes on forever.”
    This is a troubling statement. The speaker is focusing more on her own feelings than the well-being of a child.

    As a registered nurse, who has experience with Munchhausen by proxy syndrome, it will be interesting to see how this case turns out. More common than the public knows!

  • Anonymous

    i wonder how romniecare factors into this i believe it unlimited revenue to the hospital 10 months that bills going to be upper 6 figures or better.
    i wonder if federal kidnapping charges could be brought

  • Steven Bensics

    You are so stupid; BCH is a PRIVATE hospital

  • Steven Bensics

    You’re a moron; BCH is a PRIVATE hospital

  • Steven Bensics

    So are all you morons who upvoted Fisher

  • Guest

    It doesn’t matter whether it is private or public or whatever. Where did they get the right to do what they did? Think about it a minute.

  • Watch it

    Exactly – it is government (laws) that let them do it.

  • Anonymous

    First time I have ever heard about hospitals compaining about over medicating anyhing. They are usually the best at getting anyone who wants high.
    I have two buddies that are both hooked on oxys that all started with minor body pains. You want to see over medicated just walk down any street in America being over 100 million Americans take major pain killers today, everyday. Remember these drugs not so long ago were end of life drugs. Today you can get a presc for a stubbed toe. Oh, we only have 300 million people in this country and I am not sure how many are kids, adults but it’s truly horrible what these gangster doctors and hospitals are up to.
    Hey remember when they marketed oxys as a non-addictive pain killer, then paid off the government and continued to get millions addicted to thier product?

  • http://www.youtube.com/watch?v=V8FvmesaxXg Sam Fisher

    Still that does not mean they have a right to kidnap someone moron because federal regulation says they could moron.

  • grassroot

    This is, Liberal Fascism perpetrated by liberal fascists. And what
    this whole admin. is about and trying to foist upon us.

  • Anonymous

    Where is Tufts University in all this? Where is the doctor with the original diagnosis? Why are they not involved? They should have records to back the original diagnosis to take to the judge. Is there something more to this story?

  • DonnaMarie Powers-David Lori S

    I also have a son who has Mito and I went through the exact same thing in the 90′s with Seattle Childrens Hospital!!!!!!!

  • AB

    As a parent of children with mito this causes a great deal of concern. We recently moved and had to change pediatrician and specialists. Our new doctors are weird about everything. Its not that they don’t believe me, they just make me feel uneasy. Its like if they weren’t around for the original diagnostic period and everything that lead up to it then they automatically question everything, even after reviewing medical records. I can see how the family got into this mess. Thank God my children also have visible physical symptoms so we hopefully will never have to go through what this family has. Thank you mitoaction for fighting for them.

  • Becci Wondercheck Sommer

    If it was in any way MBP, why has the young lady declined when she hasn’t been allowed to be around her parents?
    The things that point to MBP are the exact same things that point to a caring, involved parent. If your child has a chronic disorder, you tend to learn some medical lingo, you tend to know what works to make them better and what doesn’t and you tend to want to be involved in your child’s medical care. Yet those things are all criteria for “diagnosing” MPB.
    I think it’s actually a very rare thing, with a lot of parents being falsely accused.

  • alan

    *Romneycare

  • Anonymous

    I pray no one tries that bullshit with one of my kids. It will not end well for anyone who tries to take my children.

  • Anonymous

    I AGREE WITH landofaahs-they deserve jail time.That girl is going to come home God is my witness.I will check out the site to see what I can donate.

  • Scott Todd

    How about hiring some ex Navy Seals? (Sorry to sound flippant. This story is so depressing a bit of dark humor is the only thing keeping me sane.)

  • john private

    wtf

  • wally

    I luv you Barack Obathhouse and your nutritional Moomoo too.

  • Feet2Fire

    Are you a psychiatrist? Didn’t think so.

    It is amazing how many nurses and social workers seem to be have some kind of “DOCTOR ENVY” and want to diagnose and prescribe when that is not in your job description.

    What you interpret as a “troubling statement” is just the Balcells woman identifying with the suffering that the mother is going through. RELAX yourself.

  • Julie DeVries

    thank you to Glenn for bringing this to light, awareness is key. you sir, right now are a great advocate for parents who only want what is best for their children!!

  • Defend Liberty

    Since parents have various ways to advance their children’s interests, we should recognize that inheritance is a superior moral choice compared to other options, such as nepotism.

  • MitoMom

    It doesn’t take 10 months to determine MBP – an improvement should be noted relatively soon after the parents are removed. And MBP is very rare. Just because you don’t understand mitochondrial disease, or other difficult to diagnose chronic diseases, doesn’t mean they don’t exist. I was very much made to feel like this when my son was younger – and it’s terrifying as a parent. “Luckily”, my child gradually got worse and nobody could question that he actually had this disease. How sad is that? It actually becomes easier for a parent when the disease is worse and more obvious.

    Last year around this time I took my child to his doctor – terrified that he was going into respiratory failure because of persistent shortness of breath. I even told her that I thought he was in the beginning stages of respiratory failure, and was concerned because that is how kids with his type of mitochondrial disease usually die. She dismissed me. Told me I knew too much and to quit worrying – it was just a cold. Two days later he was rushed to the hospital in an ambulance and admitted to the ICU. He died 33 days later. Doctors, and nurses in your case, suck!

  • MitoMom

    BCH has not allowed them to participate.

  • Lisa Teeter

    A similar thing happened to my grandson in Georgia. He was removed by a Physician and Social Worker with poor ethics. I say this because I have now earned a degree in Social Work. It took several months and two attorneys in Atlanta to get him back. I would love to tell you my story, in hopes that it would help other families. He was diagnosed with mito through a muscle biopsy and since then, my granddaughter and daughter have been diag. with the same disease.

  • Lisa Teeter

    A similar thing happened to my grandson in Georgia. He was removed by a Physician and Social Worker with poor ethics. I say this because I have now earned a degree in Social Work. It took several months and two attorneys in Atlanta to get him back. I would love to tell you my story, in hopes that it would help other families. He was diagnosed with mito through a muscle biopsy and since then, my granddaughter and daughter have been diag. with the same disease.

  • http://AngryMarks.com/ Kevin Fields

    The name calling is not necessary, but snowleopard is correct, this is state-sanctioned kidnapping. It doesn’t matter if the hospital is private, they requested that a state government agency assign them legal guardianship of this child by claiming that her parents were neglectful.

  • Victoria Buzescu

    I completely agree. These people are Holocaust Deniers and eugenicists posing as doctors. They are Neo-Nazi quacks who believe in euthanizing disabled children in violation of the American With Disabilities Act. There was the North Carolina Eugenics Board Scandal that sterilized thousands. The same thing happened in California. The American Eugenics Society is a Neo-Nazi and White Supremacist institution that has changed its name and face. These people want to kill disables kids. There is a CNN story about it . Euthanasia is legal in countries like Belgium and Switzerland, the central command for Neo-Nazis and eugenicists quacks. They brought their BS to the USA before Hitler with the Nazi Party. http://edition.cnn.com/2013/11/27/world/europe/belgium-euthanasia-children/index.html?iref=allsearch

  • Victoria Buzescu

    The Conn Children’s Hospital wants to euthanize disabled kids. These people are Holocaust Deniers and eugenicists posing as doctors. They are Neo-Nazi quacks who believe in euthanizing disabled children in violation of the American With Disabilities Act. There was the North Carolina Eugenics Board Scandal that sterilized thousands. The same thing happened in California. The American Eugenics Society is a Neo-Nazi and White Supremacist institution that has changed its name and face. There is a CNN story about it . Euthanasia is legal in countries like Belgium and Switzerland, the central command for Neo-Nazis and eugenicists quacks. They brought their BS to the USA before Hitler with the Nazi Party. http://edition.cnn.com/2013/11/27/world/europe/belgium-euthanasia-children/index.html?iref=allsearch

  • Victoria Buzescu

    I support the President. I do not agree with Beck about everything, but he is doing the right thing by advocating for Justina’s rights.

  • Shay

    if BCH says Mito doesn’t exist, why do they have a web page on it? BTW, Mito can’t be found as a disease on their main web page, they have it on a separate web site.

    http://www.childrenshospital.org/centers-and-services/programs/f-_-n/mitochondrial-program/overview

  • Kabc Gabc

    I wonder if part of the problem is the FDA’s refusal to fast track Coenzyme Q10 from current Orphan Drug status to Approved status. There is a LOT of support for prescription forms of vitamins that can be bought OTC as well – vitamin K, carnitine, and vitamin B12 to name a few. Coenzyme Q10 is a vital first treatment for mito, and I can’t get insurance coverage for it, and not only that, many hospitals are starting to refuse to give patients, or let patients take, OTC products.
    Metabolic diseases are often given short shrift in this regard.

  • Anonymous

    If I were Massachusetts parent, I wouldn’t bring my child within 100 miles of this place.

  • Guest

    Only a Police State can take kids from the family and get away with it. usaPolicestate Yes we are

  • Chicana

    Well, this overwhelming story indicates that medical staff, familiar with the suicide of its most prolific pedophile pediatrician in 2011, and arrogant with its mediocrity, is well placed to run the V.A. I am arranging for my UN NGO, which will suffer consequences from the IRS without a doubt, to file a human rights complaint against the US Dept of Justice for non-intervention. Uh, Harvard…oh yes, the Administration has quite a few of the Boston-based clan. Well, if Black or Anglo feminists from NEW YORK will not protect this teen in at least organized advocacy, then those of us who can will seek other means, including the much over-looked southwestern chicanas such as ourselves.

  • Samantha H. Diaz

    I have a similar situation with Bham Al Childrens Hospital acqusations once daughter was taken there emergency situation and they took her on Oct 7, 2014 she is about to be 17, she is still in foster care and they wil not give her back. The worker keeps telling her she will not come home which upsets her, her sister had just passed several months before her incident which was very tramtic to us from a battle with Cystic Fibrosis. It is a criminal thing they are doing it is not right to come in tear apart a family and there lives and they have not even given us any resources of counseling or home care plan, it is insane this is only a dash of my issue it goes on and get worse. I have had y job for 11 years though all this I have develop sever depression, on the verge of losing my job, and not to mention my daughters mental stability going through this.

  • bbob

    On Huckabee just this evening the girl’s father mentioned some of her symptoms, easy bruising, pale complexion, receding gums, tiredness, etc. And he said her symptoms came on after a bout of the flu, These are the same symptoms as scurvy, caused by a lack of vitamin C. I’m sure they must have checked this right off but maybe they didn’t .

  • http://www.brassbay.com EduMan56

    Locate the person(s) involved in Boston.

    get their attention by filing civil charges against all involved PERSONALLY, as with O.J. Simpson, the family should be able to stop these monsters in civil court.

    Personally , I would like to invite the young doctor to a debate on ethics. I would also like to invite the Woman that administrated this grant funded research action to meet a friend of mine from the Military. I spoke with her last week and she stated unequivocally that she would provide FREE self defense training for her!

  • http://www.brassbay.com EduMan56

    Utilizing our governments funding mechanisms to cash in on available grants which require patients to study, administrating research frameworks (approved by CFO’s of course, and the Controller I’m sure) to utilize ill gotten people to supply the financial machine just created is very much like grabbing folks off the street and grinding them up for food, as long as they sell the food. see below