Transcript of Show on the “Pillow Angel”
Aired January 12, 2007 – 21:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
KING: Welcome back.
She’s not aware of it, but there’s a 9-year-old little girl in Seattle, Washington who is in the middle of a raging medical ethical debate. Her name is Ashley, born with a rare brain disorder that will leave her a mental and emotional infant for the rest of her life.
And now, at the request of Ashley’s parents, doctors have taken surgical measures to keep Ashley from growing up physically.
Critics claim that Ashley’s parents subjected her to surgical and hormone treatments to make their own lives easier. But her parents say the measures were taken strictly for little Ashley’s benefit.
We’ll discuss this a great deal.
And we’ll start with Dr. Douglas Diekema.
He is in Seattle.
He’s director of education at the Truman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital, one of the doctors involved with this case. How did you get into this case, doc?
DR. DOUGLAS DIEKEMA, TRUMAN KATZ PEDIATRIC BIO-ETHICS CENTER, SEATTLE CHILDREN’S HOSPITAL: I was asked to get involved after Ashley’s parents presented to our hospital and had a conversation with one of our physicians about doing the things they thought would benefit their daughter. As the…
KING: Was that all done at your hospital?
DIEKEMA: That was all done at our hospital. And as the ethicist on call, I was the one who initially got the call to evaluate whether this was appropriate or not.
KING: And how did — what was the basis of your decision?
DIEKEMA: Well, it ended up not being my decision. My decision was that the three issues in question were controversial enough and complicated enough that we really needed many people to think about this. We needed a process where we could have a discussion and think thoughtfully about each of the three requests.
And so we brought this to our full ethics committee and had that conversation.
KING: Was it a vote?
DIEKEMA: It was not a vote. It was a consensus. There — I can tell you that there was no one in the room who disagreed with the decision.
KING: All right, tell me, without being too technically medically, what was done.
DIEKEMA: There were three things. Ashley’s parents asked if it was possible to accelerate the end of her growth period so that she would ultimately be shorter than her destined height. That was done with high dose estrogen, which is like a super birth control pill.
The second was that they asked that she have a hysterectomy, primarily to control symptoms of menstrual periods, as well as bleeding.
And, finally, they asked that her breast buds be removed. And that was also related to the potential discomfort associated with being moved about and having straps around her chest.
KING: Had that not been done, doctor, what would her grown up life been like?
DIEKEMA: Had those things not been done, Ashley would probably have been about 5’6.“ She would have been too heavy for her parents to pick up. She would have menstrual periods, presumably on a monthly basis, would, in all likelihood, be on birth control pills most of her adult years in order to prevent the possibility of pregnancy, as well as control menstruation to a certain degree. And her parents’ mind was at a high likelihood of having a fair amount of discomfort from adult female breasts because of straps associated with her chairs and so on.
KING: And her life like this is what?
DIEKEMA: Her life like this is otherwise no different. The main difference is that she will be shorter. She has not been made perpetually a child. She — she — when she’s 15, she will look like a 15-year-old. She’ll be a little shorter than she would have otherwise been. When she’s 33, she’ll look like a 33-year-old.
KING: I see.
DIEKEMA: She will development — develop otherwise similarly. She will not have menstrual periods and she will not develop adult female breasts.
KING: The parents consented to some questions submitted in advance which I submitted to them today.
We’ll show them on a screen and give you some of their answers.
I asked them, “What made you take her to the doctor the first time? Were you surprised by the diagnosis?”
They said: “Long story. Some other time.”
I asked them if they consulted with family members and the answer was “Ditto.”
I then asked what kind of criticism have they received from people who have learned about this through the Web site.
And they said, “We have received 3,600 plus private messages. They continue to flow at the rate of 200 a day. Ninety percent plus in support of Ashley’s treatment. Today, we posted on the Web site some of the 10 percent or so that we’ve been able to read. Many of the support messages are from families who have direct past or present experience with disabled children. Their testimonies are a real life illustration of the substantial benefits this treatment will bring Ashley and hopefully others.”
The fourth question was, “Why do you choose anonymity for yourselves and your other children but show unobscured pictures of Ashley on your Web site?”
And they say, “The story is about Ashley.”
Doctor, are you surprised, going by their figures, that it’s 90 percent in favor?
DIEKEMA: That doesn’t surprise me. That — I — the feedback I’ve gotten has also been more positive than negative. It’s not that people don’t recognize that there’s complexity here. It’s not that people don’t recognize that there isn’t the potential to do these things on someone who perhaps it should not be done on. But I’m hearing from many, many parents of similarly situated children who are just grateful that someone has been able to respond to what parents really felt was important for the well being of their daughter.
KING: Why was her appendix removed?
DIEKEMA: Her appendix was removed for the same reason it’s removed in almost everybody who undergoes abdominal surgery. That was not a decision that was made any differently for Ashley than anyone who undergoes abdominal surgery.
If you require abdominal surgery, the surgeon will almost certainly ask you for permission to remove the appendix so that there’s no chance you’ll get appendicitis at some point in the future and need it removed for that reason.
KING: Was the other side in your discussions with the ethics committee that you were playing god?
DIEKEMA: There are always people who will claim we’re playing god. We — we can’t help but play god in this world and in medicine. Every time we intervene in the course of patient’s care, we’re playing god. When we put a child with Attention Deficit Disorder on medication we’re playing god. When we choose to treat pneumonia, to a certain extent, we’re playing god.
My personal opinion, as somebody who has strong religious beliefs is that god’s intention is that we use the tools we have to do what we think is best for other individuals. And in this case, that meant asking ourselves whether these three things that the parents were asking for would benefit their daughter and benefit their daughter in a way that justified any potential harm.
KING: We’ll have other distinguished panelists join us.
Dr. Diekema will remain with us.
We’ll be right back with more of this fascinating story.
Don’t go away.
(BEGIN VIDEO CLIP)
DR. SANJAY GUPTA, CNN CORRESPONDENT (voice-over): Ashley has a mysterious brain impairment doctors can’t fully explain. She’s never learned how to walk, talk or even sit up by herself. Nine years later, nothing has changed. Her doctors say nothing will.
DIEKEMA: Her cognitive function was the equivalent of that of an infant and always will be. So when you see Ashley, it’s like seeing a baby in a much larger body.
(END VIDEO CLIP)
(COMMERCIAL BREAK) KING: We are back. Dr. Douglas Diekema remains with us, he is in Seattle and in Madison Wisconsin, Dr. Norman Post, professor of pediatrics and director of bioethics at the University of Wisconsin.
In New York, Dr. Keith Ablow, our buddy and psychiatrist and best-selling author, host of executive producer of the Dr. Keith Ablow show in syndication. And in San Francisco, Beverly and Alan Bertana. Beverly is chairperson of the board of directors of the Disability Rights of Education and Defense Fund. She and her husband alan had the son with the same disabilities of Ashley, the so-called “pillow angel.” He passed way in 1992 then say they never would have considered the Ashley treatment. Let’s start with Dr. Fost. What do you think?
DR. NORMAN FOST, BIOETHICS, UNIVERSITY OF WISCONSIN: I’m amazed at the intensity and extent of the emotion about this, Larry. It strikes me this is an incredibly caring couple who wanted to do what was best with their child. They got a lots of consultation and thought about it very carefully. They used treatments that were not experimental, as people claim. Estrogen has been around for decades, using it to slow down growth has been done before, taking the uterus out of profoundly retarded children to reduce the fears associated with menstruation and reduce the risk of cancer. These are standard things of pretty low risk and they were people who claim that the parents for their convenience, obviously, have not read the father’s Web site, which was remarkable. These are good parents that wanted ….
KING: Doctor, go ahead. I’m sorry.
FOST: These are good parents who want to care for their child as home as long as possible and have her have as many experiences as she can. If she’s smaller and lighter, they can take her more places, she can have a richer life.
KING: Dr. Ablow, what do you think?
DR. KEITH ABLOW, FORENSIC PSYCHIATRIST: First of all, let me say, Larry, I wouldn’t presume to be able to gage of emotions of parents who truly have to deal with a catastrophe like this. But I can tell you having sat with a lot of people and a lot in trouble with terms of their kids’ well being, that parents think about the future. Who is going to care for this young woman? When she does age, what kind of well being will she have? Will it be easier to care for her down the road?
Of course, trying to go inside her soul or mind and say, well, are we depriving her of any kind of facet of life that she would truly miss? This is someone with an infant’s mentation and ability to think. I cannot imagine, really, that we are depriving her of a sense of, what, womanhood down the road? I don’t think she could have appreciated that. On the other hand if we can save her from additional bed sores, if we can allow her parents to hold her in a way that we feel is more affectionate, I think that’s very real.
KING: Beverly and Alan, the parents who lost the son with the same disease. How old was he when he died, Beverly?
BEVERLY BERTAINA, HAD SON WITH SIMILAR DISABILITIES: He was 19, almost 20.
KING: All right. You disagree with this. Why?
B. BERTAINA: We saw Adam and many other children with disabilities as human beings first. We looked at them as people, not as their disability. They have a right not to have their — to be surgically altered in order to fit into an environment.
When Adam was at home, we worked very hard to change the environment to fit him. That’s why we have ramps. That’s why we have — we had a lift in our van. That’s why we made sure that the school was appropriate for him. So that — so that the environment fit his needs. And he didn’t have to be changed in order to — he was not able to make that adaptation.
KING: Alan, would you make this a law? Would you prevent this from happening legally?
ALAN BERTAINA, HAD SON WITH SIMILAR DISABILITIES: I believe I would. The United Nations just passed a resolution that they are asking countries to sign regarding recognizing the humanity of people with disabilities and respecting all of their rights on that basis.
KING: How about that, Dr. Diekema? Doesn’t Ashley have rights?
DIEKEMA: Absolutely. And I think the biggest right Ashley has is to be treated in a way that’s appropriate to her situation. We have treated — I think she’s being treated very humanely and I think her rights are being respected.
The most humane way you can treat somebody is to treat them appropriately for what their needs are and what their context is. You don’t treat everybody identically. You treat them as a person, which means they are different form the person sitting next to them.
What treating Ashley humanely means is recognizing is what her world is and will be for a long time is her loving family, her parents. That is where she gets her love. That is where she gets her care. It’s a small world. And what these parents requested are three things they feel will make her life better in that small world. I think that’s treating her humanely.
KING: Before we go to break, here’s another question we asked parents and they submitted the answers to some of them. This was one.
We asked what kind of emotional stress have you and your family gone through with this? Have you ever regretted the decision?
And they answered, “With all the real life testimonies we’re seeing, we’re more certain than ever about the life changing benefits this treatment will bring to Ashley. We are little tired, however. The powerful statements of support have been an incredible source of energy. We are very passionate about communicating our experience to other families that they might benefit from it.”
Back with more, we’ll have an additional guest joining us, the incredible Joni Tada. Don’t go away.
(BEGIN VIDEO CLIP)
DEBORAH FELDMAN, KING 5 SEATTLE: As Ashley grew older, her parents began worrying they would not be able to caring for her if she grew too big for them to bathe, lift and move. That’s when they asked doctors at Children’s Hospital if they could embark on an unprecedented medical path that included a hysterectomy, removal of her breast buds and a lengthy course of estrogen treatments all designed to keep Ashley small.
KING: Welcome back. Our outstanding panel remains. We are joined now by Joni Tada, a return visit with the radio host and best- selling author and host who became quadriplegic at age 17 after diving into shallow water. She is founder and president of Johnny and Friends. Your accident happened, you were already a grown woman. What makes of this?
JONI TADA, RADIO HOST, QUADRIPLEGIC: Well, 17 years old, I was. What I make of it is that I understand disability. It’s hard. It’s inconvenient. I can empathize with the parents. But honestly having read the blogs and reports, I think they overstate the benefits to Ashley and they understate the convenience to themselves.
KING: You’re assuming the convenience for themselves, though?
TADA: They said it could make it easier for to be transferred out of bed. But the question is, this decision has not been made in a social vacuum. These parents and their decisions are going to impact people with disabilities and influence trends and the trend is to move toward accepting medical surgeries, removal of body parts, in order to make it easier to transfer somebody like me out of my wheelchair into bed. Why not cut my legs off? I cannot walk.
KING: What rights does a parent have over a child? They went through a hospital, as Dr. Diekema said, they went through an ethics committee and had a whole discussion, a complete discussion. They were certainly not asking irresponsibly.
TADA: Well, rights are moral claims we can make upon society, claims that can be backed up by law. And by virtue of our discussion tonight, I think that shows there’s a serious moral question as to this procedure, this Ashley treatment. And many friends in the disability advocacy community are questioning the legality of it. In fact, my good disability advocacy friends are asking the American Medical Association to come out with a letter of condemnation against this procedure.
KING: Dr. Fost, how do you react to that?
FOST: I can not imagine what law has been violated. These are asking licensed doctors, very respected doctors to provide treatments that is clearly of benefit or at least of potential benefit. These are pretty low risk treatments. I would like to know what law it is that they violated. I cannot think of any.
TADA: The legality of it is yet to be determined. But if we are doing things so that a surgical procedure, so that a person is safeguarded, let’s say. Or she will not be sexually attractive to predators or she will be more comfortable, there’s a church nearby that has an independent care facility for special needs children. There are some of these special needs children that run away. They are runners. And they pose a safety risk to themselves. So what do you do? Do you surgically clip their Achilles’ heel, their tendons so that they will not run away?
KING: Dr. Diekema, will Ashley have a better life?
DIEKEMA: I’m convinced she will have a better life. I think it’s important to recognize here that Ashley is in a very different situation than Joni or all of the disability rights people who been speaking out on this issue. The reality is that Ashley will never be a person who will be capable of expressing her feelings or opinions about anything or even understanding them. She will remain a six- month-old in terms of her ability to understand. She’s always reliant on her parents and always will be.
And it just seems to me that in that situation, when the parent presents a case of three things in this case that will help her, I’m not convinced that that shouldn’t be offered. And sure, this may make their life a little more convenient. But that’s an illustration of something seems to be missed here, which is it may be impossible to unwind parental convenience from the welfare of this particular little girl.
TADA: The challenge is what about the groundwork this is laying for the future eugenics against people with disabilities?
KING: She will only be six-month-olds mentally all of her life.
TADA: Does that make her any less …
FOST: Can I comment on that?
KING: Who is that?
FOST: Norm Fost here.
KING: Quickly, Norm.
FOST: This claim of eugenics. Eugenics is about coercive government policy to sterilize people for fear that they would make more retarded children. That’s not what’s going on here. This is not state action. She did not have her uterus out because of fear of creating retarded children. It was done to help her, not society.
KING: I will hold it right there. Let me read another one of the questions.
By the way, these parents have not been asking questions but they agreed to answer some put to us. I put them earlier today and they answered it by text. The question was, “ritics say you’re putting Ashley through serious political procedures for your own convenience. For example, Arthur Caplan, a bioethicist at the University of Pennsylvania has written that while yours and Ashley’s problems are real, freezing a person into childhood is not the solution. How do you react? Their answer was, ”This is all about Ashley’s quality of life. In a different quote, Caplan talked about Ashley’s behavioral problems. This is puzzling to us and suggests that he is not clear on Ashley’s cognitive state, which suggests he did not read our article. Back to the question. Ashley’s mental and cognitive abilities are approximately at the level of three months old. Ashley in a 9.5 year old body is more appropriate and dignified than in a fully-grown body.
TADA: Larry …
KING: Hold it, Joni. I will come right back to you. We have more to go and we have a lot of guests. First, let’s check in with John Roberts, who is sitting in for Anderson Cooper and will host AC 360 at the top of the hour. John, what’s up?
JOHN ROBERTS, CNN HOST: Hey, Larry, good evening to you. Good discussion you have.
Coming up on 360, by the way, much more on the incredible story out of Missouri. As you reported on the top of the hour, two missing boys rescued from a home today. One snatched on his way home from school this week. The other has been missing for more than four years. We are going to talk with “America’s Most Wanted’s” John Walsh whose own son Adam was abducted 25 years ago.
Also a major development in the sexual assault case against some Duke lacrosse players. We will tell you how a decision by the district attorney could mean the end of that case. And the Air Force sergeant who may lose her job for posing in “Playboy.” We will tall we will talk to her ahead on 360. Larry?
KING: Thanks John. Yes, sir. And we’ll be back with more right after this.
(BEGIN VIDEO CLIP)
SANJAY GUPTA, CNN CORRESPONDENT: Doctors gave her estrogen therapy with a patch to stunt her growth. Surgeons removed her uterus and breast buds. They say these procedures were performed after careful examination by an ethics panel at Seattle Children’s Hospital. The result, Ashley will be about 4’5“ and 75 pounds for the rest of her life and she will never hit puberty.
(COMMERCIAL BREAK) KING: We thank Beverly and Alan Bertaina for joining us in the earlier segments. With us now is Steven Rosenbaum, the disability rights attorney. He is the attorney for Protection and Advocacy, Inc. And has a 21-year-old son with severe mentally retarded and cerebral palsy. Where do you stand on all of this, Stephen?
STEVEN ROSENBAUM, DISABILITY RIGHTS ATTORNEY: You saw pictures of my son earlier flashed in the background, that’s David. Where I stand is I reject Dr. Diekema’s notion completely as does the disability rights movement, the ADA, Americans with Disabilities Act tells us and Alan now says United Nations treaty that it’s about humanity, it’s about dignity, it’s about quality of life, with whatever supports or accommodations are needed. It’s not about Joni — I’m glad Joni’s living the life she is but Joni’s message is right, we have to look at all people regardless of the severity of disability and give them the opportunity to develop the best they can.
KING: Dr. Ablow, how would you respond to that?
ABLOW: I would respond, Larry, that these parents are doing things we would hope parents would do. Namely, they are trying to ensure quality life for their daughter. It is more appropriate, actually, for her to be in a physical body more the size to kind of match her intellectual abilities, which are so limited and that affords her a higher quality of life. Easier transfers, less chance of being assaulted. After all, you covered on this very show the case of a woman in New Jersey who was impregnated while in a coma. These are real issues.
And I think physicians did what they should do and what I was taught to do in medical coo school — namely relief of human suffering. It will not be easy for her to have fully developed adult breasts have to be harnessed with that kind of physical reality. The physicians in a very methodical way exercised the kind of ethical and professional judgment that I wish every case would receive.
TADA: I think you need to remember that society, if it can find a way to cut costs by removing proper care for people with disabilities and instead place it with these surgical removal of body parts, society will do it. Given the opportunity, society will always move in the direction of convenience for the masses at the expense of people with disabilities.
We have heard the discussion about human rights here. And I have heard one expert observe that — well, Ashley has no cognitive ability. She does not experience human dignity. Well, then let the Alzheimer’s patient run around naked. Let the boy with autism flap his arms with no intervention. Let the mentally handicap eat off the floor. We need to treat people with disabilities with respect, even if they do not have the cognitive ability to understand or feel what that dignity is all about.
KING: Dr. Diekema? DIEKEMA: I think that’s a mischaracterization of what was said, actually. I think what was said is what’s dignified, what is humane and what’s quality of life will depend on where you sit …
KING: I’m sorry, doctor. We are running short on time. We will do a lot more on this. We have one more question that we posed to the parents.
And that was, “Who will take care of Ashley when you are too old to do so? Do you plan to ever put her in a home?
And the answer was, “It is our strong preference that she stays in the care of a loving family. However after we are gone it will be her family’s decision.”
This story has not ended and I promise you will do much more on it in nights ahead.