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 –
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.
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.