Should the government be able to choose when a child dies? The parents of Charlie Gard are fighting tooth and nail for their parental in Britain’s High Court to determine just that.
Bobby Schindler, brother of Terri Schiavo and founder of LifeAndHope.com, joined Glenn on radio Thursday to talk about the tragic Charlie Gard story.
Charlie is an 11-month-old baby in London with a rare genetic condition that doctors say is terminal. His parents want to take him to the U.S. for experimental medical care and have raised the money to do it, but the European Court of Human Rights has ordered the hospital to remove his life support so he can die “with dignity.”
Schindler understands all too well a court ordering your loved one to death. Terri Schiavo went into a coma in 1990, living in a mostly unresponsive state for 15 years. When her family fought to keep her alive, her case became a flashpoint for the “right to die” debate concerning patients on life support. Michael Schiavo, Terri’s husband, won the case and had her feeding tube removed in March 2005. She died 13 days later.
Visiting Charlie’s parents in London, Schindler noticed the toll the ordeal had taken on the couple.
“This is just day-to-day torture for them, not knowing,” Schindler said.
Schindler theorized that the U.K. hospital can’t take the risk of releasing the child to the U.S. for experimental treatment and their diagnosis being proven wrong. Charlie’s parents raised more than $1 million to take him to the U.S. for treatment, and President Donald Trump has offered U.S. assistance. The Vatican children’s hospital in Rome has also offered to provide care.
During today’s court hearing, Charlie’s parents stormed out of court after reacting to comments made by the judge. They returned about an hour later.
Rob Stothard/Getty Images
GLENN: The parents of a baby that has been born with a rare disease returned to court today in London, hoping for a fresh analysis of their wish to take their critically ill child to the United States for treatment. The United States has doctors that will treat. They have money to treat. The Vatican and the pope have said, “We’ll give the parents and the baby a passport for the Vatican so we can take the child out and transfer him even to the — the Vatican hospital in Rome.” For some reason, the government health care system — and I hate to break it to you, but this is what we spoke of when we talked about death panels. The court system, along with the doctors, have decided there’s no chance for this baby to live. And even if they have the money, they are not allowed to take the child out of the hospital and get any treatment anyplace else. I have to tell you, if that were my child — I said yesterday that I would relinquish my citizenship in that country, and I would never return home again.
I said that to Jason, a friend of ours, yesterday. He said, “Are you kidding me? I’m sorry. But I would grab a gun, and I would free my child from the hospital.” You wouldn’t get away with that, and that would be a very bad idea. But wouldn’t you feel that way?
We have Bobby Schindler on. He is Terri Schiavo’s brother. He founded the Terri Schiavo Life and Hope Network. If you believe in life and you know what’s going on, you’re paying attention at all, get involved at lifeandhope.com. Lifeandhope.com.
Bobby, welcome to the program.
BOBBY: Hey, Glenn, thanks for having me. It’s good to talk to you.
GLENN: You are in London right now?
BOBBY: Actually, I was over there for four days. I had to get back — I got back on Tuesday. Back in the states. But I was over there, and I visited with the parents for a few days. And I also had the opportunity to visit with that Charlie.
GLENN: So, Bobby, what is happening with Charlie? How are the parents, first of all?
BOBBY: Well, as you can imagine, Glenn, this is just day-to-day torture for them, not knowing if today or tomorrow is going to be the day where the hospital removes his ventilator. So you can tell it’s taking its toll. But they’re a strong — they’re a strong couple. They’re very humble. They’re fighting for the life of their child. And I think why they’re getting so much support is because parents can relate to what they’re going through, as you just alluded to when you were talking about the case.
GLENN: Bobby, what do they do for a living? What kind of people are there? Are they upper class, middle class, lower class? Who are they?
BOBBY: Yeah, I’m not sure. Just blue-collar. I think Connie was just a stay-at-home mom. I’m not exactly sure what the father was doing. But he hasn’t worked in several weeks now, just really being attentive to the struggle that they’re going through. And I certainly could sympathize and empathize, just this turmoil and just as I said, this torture they’re experiencing right now.
GLENN: Bobby, I remember when we were in Tampa together. And at first, I was on the other side of your sister’s argument. And then I actually did my homework and woke up and met you guys. And I’ll never forget the look on — in your mother’s eyes and your father’s eyes. And even you, for a long time even after, you just — you look tired. Your whole family. Your sister, everybody, just tired.
And I remember in Tampa how the sides had been drawn. And the people who were chanting for your sister to die was — it was surreal. It was — it was almost, quite honestly, like what’s happening now between, you know, political rivals, where just — the hatred on one side was so strong. Is that happening with his parents?
How are the people in London and England responding to this?
BOBBY: Well, first, I got to say, Glenn, that this type of thing that Charlie’s parents are going through is happening here in the states. We’ve been doing this for 12 years after Terry died. And we’re seeing this, this erosion of our medical rights, parental rights. It’s taking place more and more across countless health care facilities in our country.
But what I — there’s a disconnect, Glenn. I was in a hearing on Monday, and I was watching these attorneys for the hospital argue their case. And —
GLENN: What is their case?
BOBBY: Completely unsympathetic, Glenn. It was just coldheartedness. And it was the same type of position that I saw taken with the people that were representing Michael, trying to end my sister’s life. They’re just — I don’t know how to explain it, other than there’s a disconnect I think to really the value of life or the dignity of life or the preciousness of this little child and the treatment that’s available for him.
GLENN: Okay. So here — in your sister’s case — and I don’t mean to be callous, but we’ve had these kinds of conversations before. And you’ve heard them a million times.
In your sister’s case, people could see themselves as your sister and say, “I wouldn’t want to live that way.” And that’s — that was the thing that motivated so many people, is I wouldn’t want to live that way.
And even though the family — your family offered to take her into the home to care for her, to cover all the costs. You wanted nothing, but your sister to have a chance to have therapy and to live.
People picked sides because they were afraid of — of having to linger themselves, I really believe.
Here, the family has great doctors overseas. They have the money. They have everything.
What is the — and usually, people don’t say — look at a child and say, oh, we got to kill him.
What is the — what’s the emotional attachment that the hospital is using to sell this killing?
BOBBY: Well, perhaps I’m oversimplifying it, Glenn. And this is just my opinion. But if you look at — they diagnosed this boy in the beginning as having no chance, and no treatment was going to help him. Now doctors come along. And I think there’s more than one doctor that’s come along and said, there is treatment available that will help him. That will help this little boy.
Now, that put the hospital in a terrible and a very dangerous situation. Because if they release him and they allow this treatment to — they provide or allow the parents to provide this treatment and Charlie improves, well, now they have to sit back and defend themselves why they made this poor diagnosis in the first place. So I think they’re scared to death of him possibly getting help or improving from treatment that’s available after they basically said this poor boy is suffering. Nothing is ever going to help him.
GLENN: That’s a pretty — I mean, Mike (sic), let me just play devil’s advocate. Talking to Bobby Schindler, Terry Schiavo’s bother, who is the founder of lifeandhope.com and deals with these issues.
That’s a pretty horrible way to look at doctors. I mean, are doctors really at that place with children?
BOBBY: Well, that’s my interpretation. But it makes sense to me. And also, think about it this way, Glenn. If they are wrong and Charlie does improve from treatment out there, think about all the other families now that are being cared for in that hospital. They’re going to start questioning. Perhaps they don’t agree with the diagnosis that they’re getting for their child because it is a children’s hospital. So they now might have to face more and more parents questioning diagnoses that are coming from the doctor to the hospital. So I think there’s a lot at stake here. And I think it’s in the hospital’s best interest, not to see Charlie get better. And that’s the only way I can explain why they’re fighting so hard to kill this kid, when there’s treatment — Glenn, when I was fighting for my sister and we were on the media, I got to tell you, most of the media was taking Michael’s side and asking those questions you were just raising. When I was doing media interviews over in London this week — and I did quite a few of them — I was — they were on our side. I mean, not my side. They were on the parents’ side and Charlie’s side. Nobody could understand why the hospital — well, they were all defending Charlie. So the interviews were pretty easy because the media wasn’t asking me any of the tough questions, like they were for my sister. And they were in agreement for wanting to get Charlie the help that’s out for them.
GLENN: Wow. Wow.
Bobby, you said a minute ago that this is happening in the United States. Can you — how often? Why aren’t we hearing about it?
Can you give us some examples of this happening?
BOBBY: Well, it’s obvious, Glenn. You could probably guess why we’re seeing this happen. Hospitals now — and, again, I’m oversimplifying it. And I’m not trying to paint a broad brush. But I think hospitals now are acting in their best interests, rather than patients. And I think we’re seeing values imposed by ethics committees and hospitals. And I think it’s — look, it’s a lot cheaper, Glenn, to end — if they look at somebody that comes in with a significant brain injury, for example, and they look at this person and they say to themselves, “Boy, he’s going to need months of care. And it’s going to be expensive. And we don’t even know if he’s going to improve or how much he’s going to improve, at least from the onset.” And if they’re in a position where they can stop treatment, which they are today — I mean, if you’re looking at it from a purely financial point of view, the hospital’s best interest is to say, “Okay. Listen, this person’s life is going to cost a lot of money. He’s not going to get much better anyway.” So then they go in and tell the parents. They give them this poor diagnosis. And they say, “Look, you don’t want to end up like a Terry Schiavo, so to speak. You know, why don’t you do what’s best for this person. Put him out of his suffering and end his life.” And they have the legal means now to do this. And I could go into the reasons.
GLENN: Have you run into people who have had your sister used by doctors like that?
BOBBY: Yes. There was an article actually.
GLENN: Oh, my gosh.
BOBBY: And people tell me this all the time. I shouldn’t say all the time. But I do hear it occasionally.
BOBBY: Where they do bring up my sister. And there was actually an article — I read it one time — where the family said that the doctors told them that your son or your daughter, whoever it was at the time, is going to end up like a Terri Schiavo. And it’s in your best interest to end or terminate that person’s life. It’s terrible. Terrible.
GLENN: How does that make you and your sister feel?
BOBBY: Well, I just think it shows you just the biases and the way we’ve been desensitized to just the value of human life. When we look at someone with a brain injury, and we want to just decide to end their life instead of care for them. It’s just systemic to the problem we have in our culture today.
GLENN: Is this a cultural thing or is this a socialized medicine thing?
BOBBY: Well, I think it’s a combination, Glenn. I think there’s a lot of dynamics occurring today.
And, again, you know, you look at the food and water issue and how it’s been reclassified, where food and water now is medical treatment rather than basic care.
BOBBY: And all these changes that have been made in our health care system today that put more and more people at risk. And we’re not even aware. I mean, people walk into a hospital situation, and they don’t even understand that hospitals now and physicians make treatment — you know, treatment decisions, rather than families. And depending on the situation. And I don’t know if you saw recently what they tried to pass in Oregon, where they tried to pass — and this was just the past couple of months, where they tried to make spoon feeding for those that weren’t able to feed themselves with a spoon, as a form of medical treatment. And, therefore —
GLENN: Oh, my gosh.
BOBBY: Yeah. I mean, this is where we’re heading. This constant push to impose values, you know, on people rather than family members, on what’s their best treatment options? And make it easier and easier to end people’s lives because of cost. And it was the lobby — lobby industry that was pushing this in Oregon to try and get this legislation passed.
GLENN: Bobby — you go to lifeandhope.com.
What can people do to help? What are you doing, and how can people get involved?
BOBBY: Yeah, I think the way people need to help themselves is become patient advocates. Understand your rights. If you are — and appoint someone who is a strong — we need heroic advocates, Glenn, that are going to stand in and defend you if you’re in a situation where you need certain treatment and the hospital is pushing back. You need to know your rights and how to defend loved ones if something like this happens to you. Because I’m telling you — and, again, there’s some — please don’t get me wrong on this. There’s some wonderful facilities out there, and we deal with great doctors all the time, and nurses. But there is this shift where we are now making quality-of-life judgments. Or, I should say the health care system is making quality-of-life judgments whether someone should live or die, based on their quality of life. And we need to understand that this is happening. And we need to know how to defend ourselves if it does.
GLENN: If you would like to get involved in Stand for Life because it may be you that can’t lift the spoon and they deem that as medical treatment. Go to lifeandhope.com. That’s lifeandhope.com. Bobby, best of luck. It’s always good to talk to you. Thank you so much. God bless.
BOBBY: Thanks, Glenn. God bless you.
GLENN: You bet. This guy is one of the most remarkable people I’ve met. Really, truly. And I just don’t know how to help because so many people just don’t want to hear about this stuff. And he is on the front lines every day. And he has not stopped. His life changed —
JEFFY: It has been now forever.
GLENN: It’s been forever. His whole life now has been dedicated because his sister was under attack. And this whole family has just — what they have endured and what they have done because of it is remarkable. You want to stand with some really good people who are fighting, go to lifeandhope.com.