Update on Justina Pelletier (teen taken by Boston Children's Hospital)

[Joker]

The judge has awarded custody to the state of Massachusetts until she is 18. I can't even imagine.

 

http://abcnews.go.com/Health/parents-sick-teen-justina-pelletier-accused-verbally-abusing/story?id=23067247

[hjffkj]

What does the parents calling them Nazis and accusing staff of kidnappings and killing their daughter have anything to do with their own ability to care for their daughter? I'm confused as to why that would have anything to do with the judges ruling.

Its a sad story and I pray they are reunited with their daughter before she is 18

[goldberry]

Sounds like the judge has some kind of personal interest in this case.  Also sounds like he took away custody because he was mad they didnt' listen to him rather than them because they were unfit parents.

[Unicorn.]

I do not understand how the courts can ignore the evidence of her going downhill so fast after BH took her away, and stopped her treatment.  Her doc in CT was a leading specialist in his field, wasn't he?  And they just ignore him too?  This whole thing makes me sooo angry.  What are they going to do when she dies under their care- say oopsie, I guess we made a mistake?      And how can they just take her away anyway?  Where's the abuse?  Where's the neglect?  

[Catwoman]

This is the first I have heard of this story, so I don't know any of the details, but I feel so sorry for that poor girl! She feels so sick and she can't even see her own family. :crying:

[FaithManor]

I think it is very telling about the attitude at Boston Children's and DCFS in Massachussetts that the child is now wheelchair bound - has been for several months - but when she came to children's and was still under treatment, she was ice skating competitively. They decide she's psychosomatic, incarcerate her in the psych ward, and stop her medical treatments and now her condition has frightfully deteriorated. I read another article that said specialists at TUFTS have been begging for several months to see her and get her treatment going again. So much for being prudent and looking at second opinions and treatment options! Apparently, the state of Massachussets runs a dictatorship over parents.

The parents violated a gag order, but I get why they did this. Without political pressure, legal scrutiny, and media involvement they had no chance of getting their daughter back to Tufts much less regaining custody. As it is, the power trip on this is unreal. How is it that a judge who never spent five minutes in medical school gets to decide the the leading researcher in her disease is WRONG and after a year of horror -months on the psyche ward, separation from family, now living in a group facility - that this is still psychosomatic???

The evidence that has been released does not error on the side of the state of Mass. at this time.

The picture of her from January 2013 in her skating costume, smiling vibrantly, getting ready to hit the ice and the recent one of her in care is just haunting. She looks like an empty shell of her former self.

[Word Nerd]

There's more about the history of this case at the Boston Globe, and you can find a previous discussion here. I don't think anyone can credibly claim that the state and Boston Children's have acted in Justina's best interest. She was being treated by well-respected doctors at Tufts—not exactly a bunch of quacks—at the time the parents lost custody, and Boston Children's insisted that they knew better. I bet every day the parents regret going to Boston Children's instead of Tufts to see one of Justina's specialists who had transferred there.

[poppy]

ETA:  IN all the divorce cases I've seen where there is a custody battle, minors of a certain age are asked their opinions on who they want to live with.  Is that consideration being given here to the daughter?

 

They probably did, but it wouldn't be disclosed (I hope).

[Laurie4b]

They probably did, but it wouldn't be disclosed (I hope).

 

I think it's very unlikely, especially in this case in which the child is alleged to have a psychiatric disorder. Because she's in a wheelchair and so sick, she is less of a runaway risk. That's a huge consideration with placing teens in foster care normally: if they don't want to be there, they just bolt. It is very difficult to keep a determined teenager in foster care.

 

Mature social workers, etc. separate out their personal relationships with the parents from the best interests of the child. Just because a parent is mouthy with workers doesn't mean they are an unfit parent and that is what is at issue in a CPS case.

 

I would like to see her hospitalized at Tufts and see if she gets better. They could prove right away whether it was somatic or not.

[Anne in CA]

My best guess is that she is in a control group for her original disorder. That way she does not get treatment, and she can be used in a study as a ward of the state. I have seen a very similar case at Oregon Health Sciences with a dear friend who was flat out told by a doctor that the state would take custody of his dd with Downs  if she was not "allowed" to be in his research. This doesn't just happen in Boston. These people had the money and influence to bring attention to what happened. Mostly this happens to blue collar single parents. She had a rare disorder that made the bad publicity worth it. I wish I were not so jaded, but I have seen this sort of power trip first hand twice. 

[itsheresomewhere]

My best guess is that she is in a control group for her original disorder. That way she does not get treatment, and she can be used in a study as a ward of the state. I have seen a very similar case at Oregon Health Sciences with a dear friend who was flat out told by a doctor that the state would take custody of his dd with Downs  if she was not "allowed" to be in his research. This doesn't just happen in Boston. These people had the money and influence to bring attention to what happened. Mostly this happens to blue collar single parents. She had a rare disorder that made the bad publicity worth it. I wish I were not so jaded, but I have seen this sort of power trip first hand twice. 

This has crossed my mind.  I believe this is one of five cases at Boston Childrens that they have done this too.  Makes you wonder what they may be researching.  

[Mrs Mungo]

It is really terrifying to anyone who has a child with a serious medical condition, especially one in which the diagnosis is possibly questionable. Parents are damned if they do and damned if they don't. We can now be considered medically negligent for not treating our child in the manner recommended by specialists *and* we can be considered medically negligent FOR treating our child in the manner recommended by specialists.

[FaithManor]

It is really terrifying to anyone who has a child with a serious medical condition, especially one in which the diagnosis is possibly questionable. Parents are damned if they do and damned if they don't. We can now be considered medically negligent for not treating our child in the manner recommended by specialists *and* we can be considered medically negligent FOR treating our child in the manner recommended by specialists.

Exactly this! My teenager's diagnosis is "failure to thrive" which for a 15 year old is code for "tests are inconclusive so we don't have a clue". He's under the care of a endo that has helped us more than any other physician and ds is doing so well! It scares me to think that some God complex hospital or clueless doctor could take my son away and the allow him to waste away under some dubious notion that they know better though they've not been involved with his treatment nor understand his hisrory.

I carry a letter from his endo with me. My dh has one in his wallet, and I have one in my purse because we've been turned in by an "all knowing" urgent care doctor who wouldn't listen and who had never seen in medical history.

Guilty until proven innocent. Honestly, I really wish we could move to Canada, UK, France, Denmark....I can think of several places that would be a lot better for us and ds with his medical condition. But, we are currently stuck.

[Slartibartfast]

This is a parent's worst nightmare. It is just so unbelievable that this is actually happening!

 

 

[Liz CA]

I do not understand how the courts can ignore the evidence of her going downhill so fast after BH took her away, and stopped her treatment.  Her doc in CT was a leading specialist in his field, wasn't he?  And they just ignore him too?  This whole thing makes me sooo angry.  What are they going to do when she dies under their care- say oopsie, I guess we made a mistake?      And how can they just take her away anyway?  Where's the abuse?  Where's the neglect?  

 

Evidently the state of MA has "lost" children before. There is something stinking here and I don't think it's in the parents' corner.

[sbgrace]

It is really terrifying to anyone who has a child with a serious medical condition, especially one in which the diagnosis is possibly questionable. Parents are damned if they do and damned if they don't. We can now be considered medically negligent for not treating our child in the manner recommended by specialists *and* we can be considered medically negligent FOR treating our child in the manner recommended by specialists.

 

This. It is absolutely terrifying to me.

 

I think it should terrify all parents at some level.

[ElizabethB]

It is really terrifying to anyone who has a child with a serious medical condition, especially one in which the diagnosis is possibly questionable. Parents are damned if they do and damned if they don't. We can now be considered medically negligent for not treating our child in the manner recommended by specialists *and* we can be considered medically negligent FOR treating our child in the manner recommended by specialists.

This. It is absolutely terrifying to me.

I think it should terrify all parents at some level.

I can see it happening. My son has hemophilia. We state that up front every time we need to go to an ER. We were on vacation and went to an ER without his normal hematologist as an advocate. (Most places we live, they have one on call to run interference for you, hematologist associated with the local hospitals.) It was for a knee bleed, a fairly common problem for a hemophiliac. Standard treatment is to give factor and ask questions or figure out other additional causes later. They were not paying attention when we said he had hemophilia, and they x-rayed his knee unnecessarily. Good procedure for a normal boy, totally unnecessary for a hemophiliac--it was clear it was a hemophilia related knee bleed. Eventually, after I mentioned for about the 6th time that he had hemophilia, the doctor said, "Oh, he has hemophilia?" And, basically admitted without coming out and saying it that yes, they should have just given him factor and not x-rayed him.

We had tried to argue against the x-ray and explain, but they blew us off and went on the "Don't you want to rule out everything and do what is best for your child" blah blah, so we just went with it and kept bringing up the "This is hemophilia, this is normal, they usually just treat it with factor and don't x-ray, do you want us to have our hematologist call you? Does your hospital have a hematologist on call?"

What an annoying waste of resources and I am not a big fan of unnecessary radiation, but we needed treatment and did not want to antagonize the doctor or have CPS called in or something crazy like the Boston case here.  We did eventually get the proper treatment, but the doctor wasted 30 to 45 minutes of his time trying to figure out things that might have caused the knee swelling and there was also the unnecessary use of the X-ray machine and X-ray film.

[bethben]

If you want to have more shock look here.

 

"Children who are Wards of the state may be included in research that presents minimal 

risk 46.404 (50.51) or greater than minimal risk with a prospect of direct benefit 

46.405 ( 50.52) of subpart D"

 

Basically, the hospital now has the right to involve this child in medical research without the consent of the parents.  What country are we even living in anymore?  I can't imagine that a lot of parents are going to place their trust in this children's hospital anymore.  If I were living in the Boston area, I would steer clear of that hospital.

 

Beth 

 

[FaithManor]

 

If you want to have more shock look here.

 

"Children who are Wards of the state may be included in research that presents minimal 

risk 46.404 (50.51) or greater than minimal risk with a prospect of direct benefit 

46.405 ( 50.52) of subpart D"

 

Basically, the hospital now has the right to involve this child in medical research without the consent of the parents.  What country are we even living in anymore?  I can't imagine that a lot of parents are going to place their trust in this children's hospital anymore.  If I were living in the Boston area, I would steer clear of that hospital.

 

Beth 

 

WHAT THE?????????????

 

Yah, I don't recognize my country anymore. I don't even want to be here anymore. Sigh....

 

What kind of system requires that a foster parent get bio parent permission in order to get a child's hair cut or ears pierced (standard regulations in Michigan's foster care system), but allows the state to MEDICALLY EXPERIMENT ON A CHILD without that same parent's permission???

 

I usually try very, very hard not to be an alarmist, and I'm not prone to conspiracy theories and such, but this scares me. Why don't we just put Dr. Mengele in charge?

[trinchick]

I took DD to Boston Children's Hospital once and only once. She was a newborn and had bronchiolitis. Her ped had seen her during the day and advised us if she had a fever over x degrees (forget exact number) to take her to the ER at Children's. 3:00 AM she spiked the fever and was rather listless. We were first time parents and panicked and took her to the ER. When we got there, her fever was back down but the resident on duty still ordered a spinal tap. I know that is SOP for newborns due to risk of meningitis but she was doing better.

 

I was horrified and asked if we could avoid the spinal tap. Her response was, "Why did you even take her temp in the first place? This is what happens when parents go around taking temperatures."   Ummm, OK. her ped told us to take the temp. And now the resident is going to give a newborn  a spinal tap to punish us for this major offense??? I asked to speak with the physician in charge, and she changed her mind.

 

Still, I have never been back to Boston Children's and would have to think long and hard about any future referrals.

[Guest submarines]

This. It is absolutely terrifying to me.

 

I think it should terrify all parents at some level.

 

It is absolutely terrifying. I can't believe this can be even happening.

[Laurie4b]

I took DD to Boston Children's Hospital once and only once. She was a newborn and had bronchiolitis. Her ped had seen her during the day and advised us if she had a fever over x degrees (forget exact number) to take her to the ER at Children's. 3:00 AM she spiked the fever and was rather listless. We were first time parents and panicked and took her to the ER. When we got there, her fever was back down but the resident on duty still ordered a spinal tap. I know that is SOP for newborns due to risk of meningitis but she was doing better.

 

I was horrified and asked if we could avoid the spinal tap. Her response was, "Why did you even take her temp in the first place? This is what happens when parents go around taking temperatures."   Ummm, OK. her ped told us to take the temp. And now the resident is going to give a newborn  a spinal tap to punish us for this major offense??? I asked to speak with the physician in charge, and she changed her mind.

 

Still, I have never been back to Boston Children's and would have to think long and hard about any future referrals.

 

And if I recall correctly, this case started when a resident refused to let the child see the doctor she'd been sent to see and insisted it was his case and somatoform disorder was diagnosed very quickly. They never turned back. I am guessing residents, like the rest of us, think they know more than they will think they know 20 years later. But in this case, no one over-ruled.

[Chava_Raizel]

This is such a terrifying situation all the way around. My youngest was in the NICU at Boston Children's for two weeks - it was cold and busy and I felt like whenever I wanted to discuss something I was treated like an idiot who didn't know anything about children (despite the fact that she's my 4th child). I never talked to the same nurse more than once and it just felt very impersonal.

 

The second week she was there, she had been trasfered back after a week in our local NICU because she wouldn't feed. They wanted to get an MRI done to make sure nothing was wrong with her mentally. The tests showed that there was nothing wrong with her brain, but she clearly had a strong oral aversion due to being intubated. They prepared us for her being on a feeding tube indefinitely. I asked if we could just bring her home then - I researched feeding tubes and how they work, I asked them to teach me, etc. But the nurse just scoffed at me and said that she would have to stay in the hospital until they got her to eat orally. No discussion whatsoever.

 

They finally transfered her back to our local hospital, where I convinced the nurses to let me try feeding her. Up til then, they were only getting her to take tiny amounts of formula orally and the rest in a feeding tube. She would then vomit up the entire feeding within an hour. I kept saying they were overfeeding her and told them I was going to camp out there and feed her myself around the clock to prove I was right. The head dr. agreed to give it a go, and 5 days later, I had convinced them to send her home.

 

If we had stayed at Boston Children's, I don't think I could have gotten them to let me test my theory and she may have been feed through a feeding tube for months longer than necessary. 

 

 

[Laurie4b]

It is really terrifying to anyone who has a child with a serious medical condition, especially one in which the diagnosis is possibly questionable. Parents are damned if they do and damned if they don't. We can now be considered medically negligent for not treating our child in the manner recommended by specialists *and* we can be considered medically negligent FOR treating our child in the manner recommended by specialists.

 

Yes.

 

In this case, the child has gone downhill. They could argue she would have anyway.  There is absolutely NOTHING preventing the state from 1) informing CT CPS that the child may be a victim of medical neglect and returning her to the custody of her parents and 2) allowing the parents to return to Tufts. CT CPS can always step in later if that seems appropriate. It's not like the parents are going to flee to Haiti or something.

 

There has been no accusation whatsoever that the parents are emotionally abusive to the child. (Professionals in this case shouldn't be surprised if they are called names by the parents. Nor does that have any bearing whatsoever in what's best for the child. That feeds into a power struggle between parents and workers that has nothing to do with the child's best interest and mature professionals understand that and take steps to deal with their own feelings elsewhere. A signficnt percentage of parents say things like that or worse when the state takes custody of their child.)  Given that, if there is a psychological condition going on, it also makes sense to me that a child's condition would be exacerbated by being away from her family during this trauma. It's really criminal.

 

I would hope that the MA legislature would look to clarifying their CPS laws to prevent this type of thing. That's the only way for anyone to deal with it at this point. It could simply say that medical neglect cannot be substantiated if parents can show that they are following advice from a qualified doctor or against parents who wish to seek a second opinion before following a given doctor's advice. Or --"Following advice of a qualified physician and/or seeking a second opinion before following the advice of a qualified physician is an affirmative defence against a charge of medical neglect."  If they make it retroactive, the family will get their child back.

[catz]

Wow - I have a feeling Boston Children's is going to see business tank. Seriously, if you cannot work WITH parents, you will not be working with their children for long. I'm just outraged and horrified for this family and especially this poor girl.

[poppy]

 

If you want to have more shock look here.

 

"Children who are Wards of the state may be included in research that presents minimal 

risk 46.404 (50.51) or greater than minimal risk with a prospect of direct benefit 

46.405 ( 50.52) of subpart D"

 

Basically, the hospital now has the right to involve this child in medical research without the consent of the parents.  What country are we even living in anymore?  I can't imagine that a lot of parents are going to place their trust in this children's hospital anymore.  If I were living in the Boston area, I would steer clear of that hospital.

 

Beth 

 

 

I don't understand why this part is shocking.  It's basically saying that she can enter medical trials with her ward's consent instead of her parents' consent. If she was denied access to a potentially life saving alternative treatment due to lack of parent consent (because that would be impossible right now), that would not be right either.
 

[FaithManor]

I don't understand why this part is shocking.  It's basically saying that she can enter medical trials with her ward's consent instead of her parents' consent. If she was denied access to a potentially life saving alternative treatment due to lack of parent consent (because that would be impossible right now), that would not be right either.
 

It's a huge DUPLICITY in the law. In most states, you as the foster parent, "you" as the state, cannot consent to even have a child's haircut unless parental rights have been terminated and appeals exhausted. So, why on earth then if a haircut is such a big deal, can the state decide a child should be a part of a drug trial or experimental procedure?

 

Something is wrong with that picture.

 

In this case, she was being successfully treated at Tufts. Now she is not. If my child were receiving successful treatment, there is no way on earth I'd let my child be a part of a trial or study. His or her health comes first, I and am very scared of a government that says they can co-opt my judgment in this. It is not the case of the parent with holding potentially life saving treatment from the child, but the state that is with holding it.

 

The other issue at hand is that in America's recent past, using poor children and orphans as guinea pigs ala Dr. Mengele happened with some regularity and particularly in the South. Many are fearful of a return to this mentality.

 

While no fan of Wikipedia as an authority, their article on illegal medical experimentation is fairly accurate. 1940's - injecting children with syphilis. 1952-1972 program on State Island to inject mentally disabled children with herpes or feeding them infected feces, adults injected with syphilis causing birth defects in offspring, 1941 illegal experimentation on a 12 month old infant, ...it's not an exhaustive list, but enough to turn your stomach.

[LMV]

I took DD to Boston Children's Hospital once and only once. She was a newborn and had bronchiolitis. Her ped had seen her during the day and advised us if she had a fever over x degrees (forget exact number) to take her to the ER at Children's. 3:00 AM she spiked the fever and was rather listless. We were first time parents and panicked and took her to the ER. When we got there, her fever was back down but the resident on duty still ordered a spinal tap. I know that is SOP for newborns due to risk of meningitis but she was doing better.

 

I was horrified and asked if we could avoid the spinal tap. Her response was, "Why did you even take her temp in the first place? This is what happens when parents go around taking temperatures."   Ummm, OK. her ped told us to take the temp. And now the resident is going to give a newborn  a spinal tap to punish us for this major offense??? I asked to speak with the physician in charge, and she changed her mind.

 

Still, I have never been back to Boston Children's and would have to think long and hard about any future referrals.

 

The unfortunate reality is that with very young children clinical exam as far as excluding sepsis and meningitis really isn't helpful.  I have personally tapped infants I really was tapping only because they had a true fever (100.4 or higher) and were under three months of age (and my pediatrics colleagues tell me they will sometimes tap former preemies who are over than three months chronologically but nowhere near that from a developmental milestone standpoint) who indeed had meningitis.  If I had averted course because a parent questioned then the diagnosis would have likely been missed and the outcome would have very likely ended with the child's death. While it is true that the majority of neonatal sepsis workups do not result in confirmation of a  bacterial process at this point (and this has been an ongoing area of study for decades) we just don't have a better approach to ensure that we aren't sending children with meningitis or sepsis home to likely die.

 

While I agree that what you have stated the resident said was not the most diplomatic or kind thing to say, or something I would have said in the situation you laid out, I suppose I have also had my moments of frustration when I've really wondered why patients present to our emergency department and then essentially refuse to let us try to intervene appropriately to try and save them.  I just take a deep breath, explain again why we need to do what we need to do and then move on with AMA documentation or emergency treatment order, depending on the rest of the situation.  However, we're all human and I have no idea what this physician had been dealing with before her interaction with you.  I'm not justifying her words but I guess I do understand a bit where they might have come from. Even so, I highly doubt that she ordered the spinal tap to punish you.  I'm quite confident she was trying to help your daughter.

 

In the end it concerns me more that a hospital averted course because a parent wasn't happy than that they suggested the LP in the first place.  We rarely run into this (because most parents I come across in the ED truly want their child to be ok and want whatever is best for them so while I may need to take extra time to explain I can eventually get them to understand that but our official policy in our ED is that if a parent refuses a necessary diagnostic test or treatment for their minor child and the treating physician believes that this refusal may result in "loss of life or limb" then we pursue an emergency court order.  Personally I have never had to do this.  I thought I was going to in one case but,just as we were about to notify and start the process, the other parent showed up, and signed all consents.  

[catz]

I don't understand why this part is shocking.  It's basically saying that she can enter medical trials with her ward's consent instead of her parents' consent. If she was denied access to a potentially life saving alternative treatment due to lack of parent consent (because that would be impossible right now), that would not be right either.

I don't think it's particularly shocking given real cases of medical neglect. I can think of one highly publicized case locally in the past few years where a boy's family decided not to have treatment for some usually easily treated type of cancer for religious reasons. I will also say, in this case, the boy was ordered the treatment but the family NEVER lost custody of the boy for a minute. The boy did recover and is doing well last I heard. I don't understand why this wasn't an option in this Boston Hospital case? She has siblings still in parental custody also dxed w/mito, right?

Quite a bit of cancer treatment used is "experimental", in that it might not exactly follow a particular protocol. Treatments are tweaked for patients all the time. I used to volunteer in a children's hospital with many young cancer and bone marrow transplant patients.

[Tangerine]

.

[trinchick]

While I agree that what you have stated the resident said was not the most diplomatic or kind thing to say, or something I would have said in the situation you laid out, I suppose I have also had my moments of frustration when I've really wondered why patients present to our emergency department and then essentially refuse to let us try to intervene appropriately to try and save them.  I just take a deep breath, explain again why we need to do what we need to do and then move on with AMA documentation or emergency treatment order, depending on the rest of the situation.  However, we're all human and I have no idea what this physician had been dealing with before her interaction with you.  I'm not justifying her words but I guess I do understand a bit where they might have come from. Even so, I highly doubt that she ordered the spinal tap to punish you.  I'm quite confident she was trying to help your daughter.

 

 

I truly understand the cause of her decision to order the spinal tap and I can certainly respect that she has more expertise than I do - I wouldn't have brought DD to the emergency room if I didn't sincerely want help. No one takes a 3:00 AM trip to Boston with a newborn just for kicks.

 

However, what I couldn't adequately convey in my initial post was the tone this resident used in speaking with us. I can usually get a good read on people. She really was trying to teach us a lesson. Not sure what was going on in her life outside of our meeting. Maybe she thought we were wasting her time by bringing an infant to the ER with what amounted to a bad cold. We probably were - in fact I told her as much and admitted to anxiety as a first time parent.

 

And I also explained that I didn't completely trust our way of taking DD's temp. We had an ear thermometer that gave a different reading every time we tried it; and when I tried to take a rectal temp I was scared to death of inserting it too far so I didn't trust that reading, either. I suspect that is why she decided not to go forward with the spinal tap.

 

I also suspect that she assumes she's smarter than the parents who bring their children in for care. I know that Children's has an outstanding reputation and can recruit physicians with exceptional educational backgrounds who are used to being the smartest people in the room. It still does not excuse her smarmy tone. I can say with 100% certainty that she didn't think it was necessary to do the spinal tap but since I insisted on taking her temp and bringing her to the ER I had set the ball rolling and DD was just going to have to suffer.

[Butter]

This case seriously boggles my mind.  It really doesn't make any sense.  I'm an adult and when I am sick I want my mom.  I can't imagine how this girl is feeling.

[Lara in Colo]

I don't understand why this part is shocking.  It's basically saying that she can enter medical trials with her ward's consent instead of her parents' consent. If she was denied access to a potentially life saving alternative treatment due to lack of parent consent (because that would be impossible right now), that would not be right either.
 

 

add to that the fact that when an "interesting" case came through their doors, they took the child away from her parents and it starts to get that evil feel

 

 

[Lara in Colo]

When you think about it-- I would not be surprised at all to find kick backs awarded to the hospital and or the social services

[WagsWife]

All I know is that if my family is ever in or around Boston, and one of my children get sick...we are RUNNING to a different state.  This is *insane!

[Mommy22alyns]

This is beyond terrifying to me.  I can't even imagine what her poor parents are going through.  Did you guys catch that she's not even receiving an education or access to church?  I mean, seriously.  Her parents haven't done anything wrong and they haven't even TRIED to prove such a thing.  They just kidnapped this poor child for what? An ego boost?  I hope somebody, somewhere can make an impact.  I wonder  if ACLU would take the case?

[Momof3]

This story is horrific. (I haven't read the OP's link yet...just heard abt the story previously.) I can't imagine what those parents are going through. The parents weren't expecting the judge to rule in their favor. Probably b/c they had violated the gag order & not exactly treated the judge with the 'respect' he was expecting. My guess is that the judge was peeved by the angry (rightly so!) parents and reacted to them. The parents knew the judge wasn't happy with them & figured they'd make things public to add outside pressure. There has got to be a way to pressure the hospital into giving them back their daughter, doesn't there? I would think if they get enough phone calls... Glad I don't live in Boston!

[Joanne]

Exactly this! My teenager's diagnosis is "failure to thrive" which for a 15 year old is code for "tests are inconclusive so we don't have a clue". He's under the care of a endo that has helped us more than any other physician and ds is doing so well! It scares me to think that some God complex hospital or clueless doctor could take my son away and the allow him to waste away under some dubious notion that they know better though they've not been involved with his treatment nor understand his hisrory.

I carry a letter from his endo with me. My dh has one in his wallet, and I have one in my purse because we've been turned in by an "all knowing" urgent care doctor who wouldn't listen and who had never seen in medical history.

Guilty until proven innocent. Honestly, I really wish we could move to Canada, UK, France, Denmark....I can think of several places that would be a lot better for us and ds with his medical condition. But, we are currently stuck.

 

When I read about this case here and in articles, my non reactive mind says that there is NO WAY this went down without egregious abuse/neglect on the part of the parents.

 

But. I also survived a 5 year long custody battle that raged on  with accusations and bitterness. Based on nothing and the attorneys continued to accept their $350 an hour.

 

I also had a recent experience with the LCSW at my dd's Rhematology clinic. I called them to give them a "heads up" that we were filing a disability claim for her, based on her disease. The LCSW called me to chat about not having followed up with the referral to the geneticist. I told her I was unable due to a lapse in insurance coverage, and that was part of the reason I was filing the claim. My income (briefly) was too high for state insurance and they were not covered. She began giving "free" or "low cost" options. I may have posted about it here. But the "free" and "low cost" options were FAR from here, day/time anchored,  necessitating time off from work. I was "resistant" and she began throwing around the term "medical neglect."

I came unglued. I didn't call anyone a Nazi, but I did follow up with her supervisor(s).

 

Ironically, LCSWs should have been taught that services to low income families need to be offered in the community in which the family lives.

 

The accusations were backed off and situation successfully handled, but I "get" how the system could run rampant.

[Halftime Hope]

I've been on the AMA side of the fence enough times with complex *adult* medical issues, to know that the medical establishment does not always have the best medical interests of the patient at heart, nor do they always listen to patients who know their own bodies and their own history. That poor girl has been stripped of her advocates. 

 

 

[CaffeineDiary]

This article has a lot more detail on the case, and frankly is making me a bit more sympathetic to the state. 

 

http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

The procedures this poor girl has been subjected to, under her parents' care, are stunningly invasive, and not something I would expect to see without a reliable diagnosis:

 

 

 

Peters, who was in his late 30s and had come from the Netherlands to Boston for his residency, had completed his medical training just seven months earlier. He found it much easier to get Linda talking. She told him that a few years earlier, Justina had suffered excruciating abdominal pain and constipation. Doctors at Connecticut Children’s Medical Center in Hartford had removed her appendix as well as a long congenital band that they’d found wrapped around her colon. Still, her chronic constipation persisted. Despite taking powerful laxatives, Justina sometimes went more than a week between bowel movements.

After several colonoscopies, Justina had undergone “cecostomy” surgery at Tufts, in which a tube was placed permanently in her intestines. This created a “button” port near the belly button through which a solution could regularly be passed to force the colon to contract and flush her system. Peters took note of the new and relatively rare procedure, which a Tufts surgeon had recommended.

Linda explained that Korson, the chief of metabolism at Tufts, had diagnosed Justina with mitochondrial disease, the same disorder that another of her four daughters, 24-year-old Jessica, had been diagnosed with several years earlier.

“It’s mito,” the mother said.

But Peters had already begun to question that assessment. Here was a girl who was on multiple medications and who had undergone multiple interventions at the hands of multiple specialists, but all that care “has not yielded a definitive unifying diagnosis,” he wrote in Justina’s medical chart.

He noted that two of the criteria often used in arriving at a mitochondrial disease diagnosis were not present in Justina’s case. “Metabolic workup was unremarkable,” he wrote, adding, “She has not had a muscle biopsy.”

Just a few hours after Peters had first examined Justina, he entered a lengthy addendum to his admission notes, writing that he was concerned about the care she had received from numerous providers in different facilities and states, “the number of invasive procedures Justina has been submitted to, [and] the black and white thinking of Mom.” And he challenged Linda’s declaration of the mito diagnosis, saying Justina’s medical records suggested much less certainty.

 

That said, it seems like a sad situation all around.  Judges are typically empowered in cases like this to act with broad equitable relief on behalf of the child's best interests.  It doesn't mean that the judge is right, of course, but it does mean that she or he considered the evidence and was persuaded by it.

 

[CaffeineDiary]

Update: here's a link to the actual text of the judge's ruling: 

 

http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf

 

Based on that, it looks like the Guardian ad litem (an independent third party, appointed by the court with the sole job of representing the best interests of the child) also recommended that she not be returned to her parents.   In my personal experience, guardians ad litem take their missions pretty responsibly.  So although we still don't know all the evidence, that tends to prejudice me against the parents claims here somewhat.

 

[ChocolateReignRemix]

Update: here's a link to the actual text of the judge's ruling: 

 

http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf

 

Based on that, it looks like the Guardian ad litem (an independent third party, appointed by the court with the sole job of representing the best interests of the child) also recommended that she not be returned to her parents.   In my personal experience, guardians ad litem take their missions pretty responsibly.  So although we still don't know all the evidence, that's tends to prejudice me against the parents claims here somewhat.

 

Thank you for the link.

 

I found it interesting (but I guess not surprising) that so many here jumped to the conclusion that the judge must be biased or corrupt.
 

[FaithManor]

The problem with the above is that Boston's didn't produce a diagnosis either except "psychosomatic" which is code for "we don't have a clue". The fact is that under the care of TUFTS the evidence was that she was thriving. Under the mental health diagnosis, a once active ice skater is now wheel chair bound and according to pictures that her previous docs have seen, she has lost a tremdendous amount of weight and this was not a child that was overweight at the start of this mess. I would imagine that if I were her mother and my daughter was being helped by therapies and procedures at Tufts but regressing at Boston's then for certain I'd be sticking to the mito diagnosis like glue too!

If the disageement between two specialists can cause us to lose custody of our children when a judge who hasn't spent a day in medical school get to decide who is right and who is wrong, those of us wit kids that have difficult or unusual dianoses are very, very fearful. My middle boy has a diagnosis of "failure to thrive" which is another code for "who the heck knows" and it took a long time to find an endocrinologist who had any idea how to help him. He is thriving now, but based on this case, all it takes some other medical professional to disagree with him, and ourson could be taken away and allowed to waste to nothing while the egos argued about it.

I keep hoping dh will find a job in France or New Zealand, Australia...anywher with better healthcare and more sense than this system.

[Catwoman]

Whatever the truth may be and whomever is at fault, I keep coming back to the same conclusion, which is how sad I feel for that poor girl.

Does anyone know if she has any contact with or support from other family members or friends?

It's horrifying to think that she's going through all of this alone, with no one to trust or love. :(

[In The Great White North]

 

 

When the parents received an e-mail from the person the judge had appointed as an independent investigator to advise him in the case, they were outraged to see her list an affiliation with Children’s in the e-mail.

 

 

 

Based on that, it looks like the Guardian ad litem (an independent third party, appointed by the court with the sole job of representing the best interests of the child) also recommended that she not be returned to her parents. 

 

I wonder if these two "independent" people were the same?

[FaithManor]

I wonder if these two "independent" people were the same?

IF the ad litem is also affiliated with the hospital, this is a HUGE conflict of interest!

[Joanne]

I have just read all the links. It's a complicated case.

Based on today's reading, I think Children's has WAY too much power and is very quick to pursue custody.

[kitten18]

This article has a lot more detail on the case, and frankly is making me a bit more sympathetic to the state. 

 

http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

The procedures this poor girl has been subjected to, under her parents' care, are stunningly invasive, and not something I would expect to see without a reliable diagnosis:

 

 

 

 

That said, it seems like a sad situation all around.  Judges are typically empowered in cases like this to act with broad equitable relief on behalf of the child's best interests.  It doesn't mean that the judge is right, of course, but it does mean that she or he considered the evidence and was persuaded by it.

 

But she was being treated by the top specialists at Tufts.  It's not like her parents were sending her to have surgery in the neighbor's basement.

[hjffkj]

But she was being treated by the top specialists at Tufts.  It's not like her parents were sending her to have surgery in the neighbor's basement.

:iagree:  You don't take a child away from their parents' because 2 experts do not agree on proper treatment.  You can get a court order to stop treatment while who hash all that out but a parent choosing one experts advice over another's isn't neglect .

[Venia]

I thought I read that they had taken to "several" hospitals and specialists over the years. So I am not sure if Tufts performed all of those surgeries or could even be classified as her primary care specialists. Unfortunately "hospital/doctor jumping" ie shopping around excessively for a doctor that aligns with your personal diagnosis is one of the red flags for Munchhausen by Proxy.

Edit: actually the family fits 4/5 major red flags for MBP.