Family battling Children’s Hospital to bring teen home for Christmas

[jjenny]

Apparently the majority of Justina's complex medical needs were being met by Massachusetts doctors. And Massachusetts doctors determined that Justina was endangered. So they are in a better position to deal with these issues than Connecticut would have been. Too bad that her parents made it impossible for her to be placed in a Connecticut facility. It's up to Massachusetts to sort through this now.

Tufts is in MA in case you didn't know. Parents were treating her at Tufts and had no problems with treating her there.
It's BCH doctors that decided they didn't like the diagnosis from Tufts.
And why would anyone think DCF can be better in meeting a child's complex medical needs?
From what MA DCF's audit showed, a lot of children MA DCF takes into custody don't even get medical exams in a time period required by law.
Now, all of the sudden, they are good in meeting complex medical needs?
Shouldn't they try to meet simple medical needs (required medical exam) first?

 

[Morag]

Tufts is in MA in case you didn't know. Parents were treating her at Tufts and had no problems with treating her there.
It's BCH doctors that decided they didn't like the diagnosis from Tufts.
And why would anyone think DCF can be better in meeting a child's complex medical needs?
From what MA DCF's audit showed, a lot of children MA DCF takes into custody don't even get medical exams in a time period required by law.
Now, all of the sudden, they are good in meeting complex medical needs?
Shouldn't they try to meet simple medical needs (required medical exam) first?

Of course I know Tufts is in Massachusetts- what makes you think I didn't? As a matter of fact, my father-in-law was a graduate of Tufts University.
I said that "the majority of ... medical needs were being met by Massachusetts doctors." And I made no mention of DCF. Perhaps you should read the posts you are responding to more carefully.

 

[MyBelle]

That's why the story as we are told it is not true. She must have had more than that going on if they felt she needed an urgent transfer to a gastroenterologist - they may have been able to treat her symptoms, but if there was an underlying issue causing difficulty swallowing, that can be alarming and can't be allowed to continue. Plus, it seems quite likely that her parents demanded she be transferred because her issues were so serious. Many hospitals can technically handle the situation, but they don't really have a good way of getting an ongoing handle on it. You need specialists for that, and Boston hospitals are generally way superior. I live equidistant from RI and MA - my grandfather was rushed to RI having a heart attack - in a snow storm an ambulance rushed him to Boston for better decisions regarding what surgery to have. We knew that was a much safer option, even though it's not like RI hospitals are awful.



Holding someone in a psych ward longterm is almost always a claim of dangerousness, spoken or unspoken, but they won't release the underlying reasons unless necessary since it's private medical information. That psych ward is way too valuable to keep someone there for lack of other options - do you know how hard it is to find psych beds for children at a top hospital? DCF does not make that call - doctors do. If it's typically treated with outpatient therapy, that means there's more we don't know - they aren't just saying she has somatoform symptoms. That's one of the factors that is public because her parents and others chose to make it so. But the judge's ruling was not based on that alone - there was a lot he could only hint at.

BBM. "They" represents the parents, not the doctors at CCH. It ridiculous to suggest that "Boston Hospitals are way superior" to Connecticut. The issue was swallowing and walking difficulty. Any hospital ER should be capable of managing those problems short-term, followed by discharge and then the patient is free to follow-up with whatever specialist they chose. Which is what I believe happened in this case. The choice to go to BCH was made by the parents and instead of driving themselves, they called a taxi...er, private ambulance.

JMO

 

[MyBelle]

Tufts is in MA in case you didn't know. Parents were treating her at Tufts and had no problems with treating her there.
It's BCH doctors that decided they didn't like the diagnosis from Tufts.
And why would anyone think DCF can be better in meeting a child's complex medical needs?
From what MA DCF's audit showed, a lot of children MA DCF takes into custody don't even get medical exams in a time period required by law.
Now, all of the sudden, they are good in meeting complex medical needs?
Shouldn't they try to meet simple medical needs (required medical exam) first?

If the parents wanted their child treated at Tufts, then the ambulance should have gone to Tufts, not Boston Childrens Hospital. Logic must not play any role in their thought process.

 

[lawstudent]

Justina's family is stuck between two states. MA shouldn't have had jurisdiction since Justina was a resident of CT. Judge apparently didn't order that MA DCF had to evaluate the family. Because he wants CT DCF to do it.
So MA DCF took custody of the child, but apparently doesn't have to do whatever things it would have to do if the child was a resident of MA (such as evaluation of the parents and the home).

1) Jurisdiction in such cases not established by residency. Otherwise this could have been promptly dismissed, and CT wouldn't be able to decline. But MA can't go into CT and investigate - only refer to CT. But she wasn't removed due to her home life, so that's a non-issue. If you live in CT and enter MA right now and are witnessed abusing your child, for example, MA social services would be the only ones with authority to respond. They would take the child if you were alone, and then talk to CT and usually transfer the child to CT, who would then investigate further and either find a family placement, put the child in foster care, or work on reunification. If the child's dad lived in Texas and did not have custodial rights, MA would probably get in touch with CPS there instead and let them look into the dad, and arrange a transfer if it looks like the dad will take custody. Etc. And if you got out of jail and wanted to challenge the decision, you would file either in the CT family court or the family court where the dad lives, and deal with CPS in that state as part of the case. If no one stepped forward showing any interest in the child and you remained in jail, MA would just retain custody of the child.

If you wanted to bring some sort of civil rights suit for wrongful CPS action, you'd have to sue the MA authority since they had original responsibility for the issue. You couldn't sue CT CPS until they agreed to get involved.

2) And there is no way Children's is letting her die of fatal mito complications - I mean, talk about liability. If she's actually having symptoms that could be fatal, they are not treating them as in her head. You can't have a stroke due to somatoform disorder. Gastrointestinal issues and pain could be caused by either, but neither kill alone without a clear warning the problem isn't mental. And there are almost no treatments, so what do you think they should be doing? The recommended treatments are aimed at symptom control and stabilization, not stopping fatal complications.

 

[Morag]

We have very little information about why BCH and DCF reacted as they did in the short time after Justina was admitted. I can't help wondering if she herself told them things that alerted them. She's certainly old enough to self-report, and she may be somewhat naive and inadvertently revealed something detrimental to the parents' interests.

 

[lawstudent]

An ambulance, if you pay for it, will go anywhere you want, although usually you are going to wait for the hospital to tell you they have a bed and are expecting you.

Boston hospitals are known for being the best, and people are regularly transferred for displaying minor issues that are thought to be indicative of more major problems. My grandmother was retaining small amounts of fluid, which caused some shortness of breath, and had some pain and was working with a local hospital for months, and they were perfectly capable of providing for her immediate needs while she arranged for a specialist. But as things started to noticeably worsen, the local hospital began to suspect cancer or something similar. She refused to transfer, and they messed up and sent her home despite the fact that she was showing signs of a blood clot. She got rushed back and fortunately survived. At that point, we were able to get her to transfer to Boston, and it turned out she had extremely advanced cancer and died within a month, never having left the hospital. Yes, the local hospital was able to manage her immediate symptoms, but they missed the big picture quite a bit. Even the top doctors never found out what kind of cancer she had, so it was an especially tough case, but the point is that even minor symptoms that have been going on for a while without much impact (she seemed fine - no one knew she was seeing a doctor)can be a sign of a very complex problem beyond that hospital's expertise. She needed to be admitted - this wasn't a set up an appointment with a specialist situation - that takes literally months at many of these places. She didn't live months. That's why an ambulance took her - that's not unusual. But both hospitals were on board, and the family was - as seems to be the case in this situation, at first.

 

[MyBelle]

We have very little information about why BCH and DCF reacted as they did in the short time after Justina was admitted. I can't help wondering if she herself told them things that alerted them. She's certainly old enough to self-report, and she may be somewhat naive and inadvertently revealed something detrimental to the parents' interests.

I think it was a combination of a multitude of observations. One of the medications Justina was prescribed--the beta blocker--helps slow heart rate. I think BCH monitored her heart rate and noticed dramatic changes when she was in the presence of her mother.

 

[jjenny]

We have very little information about why BCH and DCF reacted as they did in the short time after Justina was admitted. I can't help wondering if she herself told them things that alerted them. She's certainly old enough to self-report, and she may be somewhat naive and inadvertently revealed something detrimental to the parents' interests.

Justina wants to go home.
She repeatedly told them that she wants to go home. There have been nothing reported on Justina revealing anything otherwise.

 

[jjenny]

1) Jurisdiction in such cases not established by residency. Otherwise this could have been promptly dismissed, and CT wouldn't be able to decline. But MA can't go into CT and investigate - only refer to CT. But she wasn't removed due to her home life, so that's a non-issue. If you live in CT and enter MA right now and are witnessed abusing your child, for example, MA social services would be the only ones with authority to respond. They would take the child if you were alone, and then talk to CT and usually transfer the child to CT, who would then investigate further and either find a family placement, put the child in foster care, or work on reunification. If the child's dad lived in Texas and did not have custodial rights, MA would probably get in touch with CPS there instead and let them look into the dad, and arrange a transfer if it looks like the dad will take custody. Etc. And if you got out of jail and wanted to challenge the decision, you would file either in the CT family court or the family court where the dad lives, and deal with CPS in that state as part of the case. If no one stepped forward showing any interest in the child and you remained in jail, MA would just retain custody of the child.

If you wanted to bring some sort of civil rights suit for wrongful CPS action, you'd have to sue the MA authority since they had original responsibility for the issue. You couldn't sue CT CPS until they agreed to get involved.

2) And there is no way Children's is letting her die of fatal mito complications - I mean, talk about liability. If she's actually having symptoms that could be fatal, they are not treating them as in her head. You can't have a stroke due to somatoform disorder. Gastrointestinal issues and pain could be caused by either, but neither kill alone without a clear warning the problem isn't mental. And there are almost no treatments, so what do you think they should be doing? The recommended treatments are aimed at symptom control and stabilization, not stopping fatal complications.

I am glad that there is no way Children's is letting her die. What I didn't realize until now is that they turned into Gods and figured out how not to let someone die.

 

[Morag]

Justina wants to go home.
She repeatedly told them that she wants to go home. There have been nothing reported on Justina revealing anything otherwise.

We only know what her parents have said she says. The hospitals, doctors, and DCF cannot legally tell us much, so we- you as well as I- are speculating about what might have occurred.

 

[jjenny]

We only know what her parents have said she says. The hospitals, doctors, and DCF cannot legally tell us much, so we- you as well as I- are speculating about what might have occurred.

That's not true. Globe obtained hospital records. This child repeatedly told stuff at BCH she wants to go home.

"Justina repeatedly told staff she wanted to go home, but the decision did not rest only with Children’s. A hospital spokesman said the facility “seeks to transfer patients to less medically intensive environments as soon as they are medically ready and a location is available.” The exact location however, would be up to the state child protection agency."

http://www.bostonglobe.com/metro/20...l-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html

 

[MyBelle]

That's not true. Globe obtained hospital records. This child repeatedly told stuff at BCH she wants to go home.

"Justina repeatedly told staff she wanted to go home, but the decision did not rest only with Children’s. A hospital spokesman said the facility “seeks to transfer patients to less medically intensive environments as soon as they are medically ready and a location is available.” The exact location however, would be up to the state child protection agency."

http://www.bostonglobe.com/metro/20...l-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html

Of course she wants to go home. Do you think it will improve her condition if staff told her the reason she isn't going home is because her parents have proved themselves unfit to provide the care she needs?

 

[lawstudent]

I am glad that there is no way Children's is letting her die. What I didn't realize until now is that they turned into Gods and figured out how not to let someone die.

Doctors are generally aware when someone is dying (unless it's so sudden nothing could have been done). What specific fatal event do you worry will happen to her? I realize mito can result in fatal complications, but that's not the norm, and there would most likely be warning that an organ system was failing or that there was another recurring problem. What life threatening complications is she displaying? If the stroke was linked to the mito, is there anything that can even be done to prevent that? If she was living at home before, clearly she wasn't at imminent risk of death at all times. What medications have they taken her off that you think put her at risk for death? I understand the beta-blockers, but it sounds like they were monitoring her heart in the meantime. She's not at risk for death if they were monitoring her heart and determined that the medication was unnecessary for her survival because her heart issues were anxiety related.

ETA: Many, many kids who are taken away want to go back to their parents, even if they have unwittingly given info that resulted in them being taken away. It's very sad - just because parents may have issues does not mean that their isn't a loving bond or attachment. Few children want to be ripped away from what they know. I'm not denying that Justina is really suffering from deprivation from her parents, and that the fighting could be causing them to restrict that relationship far more than is normal in a way that's morally wrong. But there could be good reason to keep her away as well.

 

[jjenny]

Of course she wants to go home. Do you think it will improve her condition if staff told her the reason she isn't going home is because her parents have proved themselves unfit to provide the care she needs?

She can compare her own condition while at home to the one she is in now. If DCF is more fit than parents to take care of her, why is her condition worse than when she was living at home?

 

[Linda7NJ]

She can compare her own condition while at home to the one she is in now. If DCF is more fit than parents to take care of her, why is her condition worse than when she was living at home?

Is it?



When she was at home, she was confined to a a wheel chair for weeks and at deaths door. Remember? she had to be transported, by ambulance, during a blizzard, to the hospital.




Sent from my iPhone using Tapatalk

 

[jjenny]

When she was at home she was not in a wheelchair.
She had a flu and complications from it, when she was transported to the hospital.
Which I think you very well know by now.

 

[liljim]

When she was at home she was not in a wheelchair.
She had a flu and complications from it, when she was transported to the hospital.
Which I think you very well know by now.

you have no idea if she was in a wheelchair at home, but we do know that she was not walking for some period of time while still at home.

you have no idea if she had the flu or what complications she had if any related to it. but we do know she was not eating and was reportedly having trouble swallowing.

you have very little idea what else was going on with her at that time or in the weeks/months prior, other than she does appear to have been able to ice skate some weeks earlier.

what percentage of her medical history do you think you are aware of? how about her medical history from just the last 15 months? what percentage of the treatment she received at children's hospital do you think you have heard about?

i would bet you it is less than 25%, i would actually expect it to be much much lower even that that.

yet that does not stop you from acting like you have all the information, and obviously any information you dont have could only be things that would prove children's made even more wrong decisions...

 

[MyBelle]

She can compare her own condition while at home to the one she is in now. If DCF is more fit than parents to take care of her, why is her condition worse than when she was living at home?

Her condition at home was difficulty swallowing and walking and her parents couldn't handle it then. They voluntarily sought medical help. What has changed? The authorities examined her home and the family and determined they still can't handle her complex medical issues. Not sure why you think you are a better judge than the authorities who have actually investigated.

JMO

 

[txsvicki]

If she does have mitochondrial disease, it could be life or death situation. Because mitochondrial disease could be fatal. No exaggeration necessary. Her cecostomy port was deemed necessary by the doctors who put it in. So if BCH/DCF have any questions about necessity of the procedure, why don't they ask the doctors who did it? Why exactly would the parents need to give up the child in order for the child to get help? It makes no sense. Resources were available to the parents while they had custody. She was provided with treatment for mitochondrial disease when parents had custody. BCH then diagnosed her with somatoform and wanted to stop the mito treatment. While in DCF custody, she was then presumably treated for somatoform, not mito (since somatoform is what BCH diagnosed her with). So how would parents giving up the child get her the help she needs, if she does have mito?

By allowing her to live in residential care and get monitoring and treatment for both conditions, and get help for themselves to handle it and tone down some plus cooperate.