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

[Laurie4b]

In reading the judge's order, it seems that a huge issue is the stance of Connecticut's child protective services. They didn't act on the complaint initially or acted and didn't substantiate so Children's Hospital went to MA CPS. Then CT said they did substantiate neglect and didn't agree with her placement at home, then they refused to take the case because they contemplated no action. Something weird is going on there and that is very unfair to the family.

 

The attorneys for the parents have their hands full, it's clear, trying to keep the parents under control. The parents have done many things to exacerbate the situation.  As an attorney I heard on TV said, "CPS has all the power. If they tell you to wear pink on Thursdays, you wear pink on Thursdays."  It sounds like neither parent has good social skills when interacting with bureaucracy. That doesn't mean, however, that they are not fit parents. I have seen ZERO allegations that they are abusive to their kids aside from this medical dispute. Being a horse's behind to professionals doesn't make you an unfit parent. They have done some incredibly stupid things and would probably have their daughter back if they hadn't. But forcing people like that to deal directly with the people they see as their adversary (CH) is not professional and not in the best interests of the child. It's too bad no one can talk them into apologizing for their behavior, which, while I understand the anger, I can also understand the violations alleged toward OTHER people's children in their own crusading. (ie if foster settings in CT fear the press showing up or fear being sued, or fear having parents of their kids told that the kids are being kidnapped.)  The time to fight for your rights is AFTER you have your child safely back at home.

 

It is very unfortunate, if true, that as one of the articles said, MA CPS is responsible for resolving disputes between doctors. What on earth? The parents are responsible. Really? If two different doctors disagree about my kid's diagnosis, a CPS worker gets to decide?  The people of MA need to be contacting their legislature if they don't want to wind up having some CPS worker decide the best treatment for their kid.  I strongly feel that the legislature needs to clarify their laws to say medical neglect cannot be alleged based on parents desire to seek a second opinion or to transfer care to another qualified doctor.

 

Frankly, the whole thing REEKS of control from Children's Hospital.  They couldn't get CT CPS to act, so they went to MA CPS. They excluded her previous Tuft's doctors from participating in panels. The social workers are in their "umbrella of influence" and the one presenting the case didn't even include a conversation with her Tuft's doctor in the original report to the court. That happens. It's not unusual for people to defer to the big hospital guns.

 

I totally agree with Joanne that Children's Hospital exerts way too much power. I would not take a child there. This publicity will hopefully change their inner workings, though not on this case. They've dug their heels in a power struggle. That is incredibly unprofessional.
 

[Butter]

If this is a case of MBP, wouldn't she be better at Children's?  Instead she seems to be sicker.  Obviously this kid has *something* real wrong with her because if it was just MBP she'd be very healthy right now away from her parents' custody - and in a hospital - for so long.

[Catwoman]

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:

That's the part I find most confusing, too.

This whole case is just plain bizarre.

[itsheresomewhere]

Did anybody figure out if the same judge and CPS officials( ones involved with this case not the whole division) were involved in the other cases?

 

 

[kitten18]

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.

 

I don't know where she had all her procedures but this was from the article in a pp.

 

 

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.

I wouldn't think these are the kinds of doctors who are going to be pushed around by parents and do unnecessary procedures just because the parents want them.
 

 

 

 

 

I don't know.  This whole thing is incredibly sad and on another level, incredibly terrifying.

[Venia]

If this is a case of MBP, wouldn't she be better at Children's?  Instead she seems to be sicker.  Obviously this kid has *something* real wrong with her because if it was just MBP she'd be very healthy right now away from her parents' custody - and in a hospital - for so long.

Not necessarily. This is all speculative but, what if her mental state (and therefore physical state) is tied strongly to her parents mental state. The psychologist at Children's noted that her symptoms were worse when her mother was in her presence and stressed. Well now, her parents are *really* stressed and no doubt making that known to her very much so when they visit. Since Children's is insisting that her care be taken over by the physc. ward, this indicates that they firmly believe that her mental health is critical. Perhaps she has Munchhausen syndrome herself? Her decline actually makes a lot of sense from that standpoint. The parents have also refused previous requests by Tufts for psychological evaluation for their daughter. You cant clear potential psychological causes without at least an evaluation. Tufts has reported them for possible medical abuse long before Children's did.




For the record, I'm not siding with Children's entirely, but trying to see the case from an alternate standpoint.

[Venia]

I don't know where she had all her procedures but this was from the article in a pp.
 
I wouldn't think these are the kinds of doctors who are going to be pushed around by parents and do unnecessary procedures just because the parents want them.
 
 
 
 
 
I don't know.  This whole thing is incredibly sad and on another level, incredibly terrifying.

"The Pelletiers had butted heads with other doctors in Connecticut — Justina’s pediatrician there would accuse them of doctor-shopping and “firing” multiple providers. And despite their fondness for Justina’s main doctors at Tufts, they had previously clashed with other members of the Tufts staff, who had filed an allegation of neglect with the Connecticut child-protection agency in late 2011."

The doctor who performed the surgery was the one they sought out at Children's. He was not allowed to get involved in her case at Children's. I get the hinkey feeling that his colleagues or supervisors may not have agreed with his decision to perform the surgery.

[Catwoman]

The more I read about this case, the more confused and conflicted I become. :confused:

[unsinkable]

I wonder if these were the mom's exact thoughts? Why wouldn't she think, "she's saved."? Or "we're saved?" From What did the mom think she herself needed saving?

"When the ambulance finally made it to Longwood Avenue and pulled into the driveway of one of the nation’s top pediatric hospitals, the mother thought, “I’m saved.” Her relief wouldn’t last long."

[kitten18]

"The Pelletiers had butted heads with other doctors in Connecticut — Justina’s pediatrician there would accuse them of doctor-shopping and “firing” multiple providers. And despite their fondness for Justina’s main doctors at Tufts, they had previously clashed with other members of the Tufts staff, who had filed an allegation of neglect with the Connecticut child-protection agency in late 2011."

The doctor who performed the surgery was the one they sought out at Children's. He was not allowed to get involved in her case at Children's. I get the hinkey feeling that his colleagues or supervisors may not have agreed with his decision to perform the surgery.

Interesting.

I really don't know what to think.

[bethben]

Whatever the the truth is behind this, there are still a few things that are still disturbing.

 

#1 This poor child is STILL in a hospital without a real diagnosis and seemingly deteriorating.

 

#2  As a ward of the state, they are allowed to do research on her.  This law assumes a bit of human goodness.  Not everyone has human goodness and they may only be out for themselves and their own prestige only seeing others as a means to an end.

 

#3  It may make parents afraid to stand up for their children when they disagree with a doctor.  I spent a couple of years disagreeing with a doctor over a  treatment for my son.  When all was said and done, my decision wound up being the right one, but if I was afraid to speak up because of fear of losing guardianship, my son's quality of life would have been compromised for a couple of years.

 

Beth

[Laurie4b]

Not necessarily. This is all speculative but, what if her mental state (and therefore physical state) is tied strongly to her parents mental state. The psychologist at Children's noted that her symptoms were worse when her mother was in her presence and stressed. Well now, her parents are *really* stressed and no doubt making that known to her very much so when they visit. Since Children's is insisting that her care be taken over by the physc. ward, this indicates that they firmly believe that her mental health is critical. Perhaps she has Munchhausen syndrome herself? Her decline actually makes a lot of sense from that standpoint. The parents have also refused previous requests by Tufts for psychological evaluation for their daughter. You cant clear potential psychological causes without at least an evaluation. Tufts has reported them for possible medical abuse long before Children's did.




For the record, I'm not siding with Children's entirely, but trying to see the case from an alternate standpoint.

 

Tufts reported but CT did not substantiate. Dr Korson, the expert they saw at Tufts acknowledged that the parents were difficult, but he found a way to work with them.