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

[Boytwnmom]

I live in MA and frankly can't believe this is happening. It's baffling. I keep reading about this case expecting to find something that makes logical sense as a basis to keep this poor child in "captivity". I just don't see any. She is not even improving in any way.

I can't figure out if the hospital is convincing the judge or if the judge is also just biased against these parents. The state, hospital, judge all seem personally affronted by the parents who were not cooperative and reacted emotionally to the hospitals's ongoing refusal to release their daughter. I just can't believe a judge wouldn't understand parental concern if a child is being held without treatment for what they believe is a physical condition.

I don't know who's right in terms of diagnosis but the deterioration of her condition and the fact a sibling has the same disorder certainly suggests a physical condition.

I'm just hoping that all this new attention will lead the court to fashioning a solution. I don't care if he needs to save face for himself and the hospital but they really need to let this kid go home.

I only recently started following this so I may be missing something. Is there anything out there that seems to make a convincing argument to hold this child?

As a parent this just freaks me out.

What is she at risk of? She is physically sick child.
She was born premature, she had a stroke at age 4. She has been diagnosed with mitochondrial disease.
How does she belong to this facility?
This whole situation is absurd.

 

[jjenny]

I live in MA and frankly can't believe this is happening. It's baffling. I keep reading about this case expecting to find something that makes logical sense as a basis to keep this poor child in "captivity". I just don't see any. She is not even improving in any way.

I can't figure out if the hospital is convincing the judge or if the judge is also just biased against these parents, or why she should still be held in DCF custody. The state, hospital, judge all seem personally affronted by the parents who were not cooperative and reacted emotionally to the hospitals's ongoing refusal to release their daughter. I just can't believe a judge wouldn't understand parental concern if a child is being held without treatment for what they believe is a physical condition.

I don't know who's right in terms of diagnosis but the deterioration of her condition and the fact a sibling has the same disorder certainly suggests a physical condition.

I'm just hoping that all this new attention will lead the court to fashioning a solution. I don't care if he needs to save face for himself and the hospital but they really need to let this kid go home.

I only recently started following this so I may be missing something. Is there anything out there that seems to make a convincing argument to hold this child?

As a parent this just freaks me out.

I personally haven't seen any convincing (or even non-convincing) arguments as to why she was taken from the parents. Even in judge's ruling, he never stated as to what these parents are accused of doing to the child.
Judge's reasoning seem to be is that parents were rude to DCF employees after Justina was taken. Which hardly explains why she was taken to begin with.
And is certainly seems to me that DCF doesn't want Justina to be seen or heard by the public. Is that a standard policy, anyone knows?

 

[wendiesan]

I'd like to see an explanation as to why Justina was prevented from being visited by clergy and receiving communion for 13 months. Does the Bader 5 team now presume to control religious affiliations? Did they see Catholicism as a negative influence in Justina's life? Are they similarly threatened by other religious organizations? What kind of protocol were they following when put this policy into effect?

 

[liljim]

I'd like to see an explanation as to why Justina was prevented from being visited by clergy and receiving communion for 13 months. Does the Bader 5 team now presume to control religious affiliations? Did they see Catholicism as a negative influence in Justina's life? Are they similarly threatened by other religious organizations? What kind of protocol were they following when put this policy into effect?

sounds like something that could be addressed with the chaplaincy at children's hospital directly.

maybe you could arrange to visit the actual chapel in the hospital and attend a service, surely you could speak with one of the many associated chaplains of different faiths that are available on a daily basis right in the hospital.

let us know what you find out about why they have a policy to specifically deny all religious access for certain patients.

 

[wendiesan]

I'll see what I can find out in the next few weeks liljim. It'll be long distance for me, which will still be OK but will take longer. Maybe someone based in Boston could also look into these questions if they're interested and if they have time.

 

[wendiesan]

She's not in Bader 5 any longer, is she? She's at a place in Framingham which provides educational and social services for at-risk adolescents.

Members of Boston Children's Hospital staff have attempted to influence the treatment of at least one other former patient long after that patient was transferred to another facility. (http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html)

' “The fact that Children’s has so much power that they can get us in trouble with a totally different hospital across the city is appalling,” said Jessica Hilliard, the mother involved in that case. Her son Gabriel is being treated for mitochondrial disease. The state did open a new investigation but ultimately closed it. '

 

[wendiesan]

FWIW, I just came across an interesting book called Who will hold my hand? A guide for parents whose child needs an operation. It was written by Kathryn D. Anderson, M.D., FACS, FRCS and published in 2009. The PDF version is available at http://www.facs.org/public_info/wwhmy.pdf.

Inspired by her experiences, and her discussions with her patients, Dr. Anderson took the title from the words of an anguished father who was overwhelmed with fear for his little girl. Both the title and the premise of this book resonated with me. Although I think there is useful and comforting advice throughout, I'm not sure how well some of it would play with the BCH teams.

In terms of this thread, there was a statement from a parent that echoed my own experience, and, I would suspect, that of many ws posters.

I'm excerpting one paragraph (p47)

“When we cross the threshold of a hospital, we feel as if we are expected to drop our intelligence at the door. We have always been in control but now are intimidated by people telling us what to do. We are punished for being assertive. If we ask questions, we get the reputation for being pushy and no one comes near us. We suffer from lack of sleep and extreme anxiety. And the only familiar people around us, our family, are as scared as we are.”

The book, I think, offers practical ways to ease communications between the professional medical practitioners and the worried family members of children undergoing hospital procedures. I hope posting this information is within the parameters set by ws.

 

[wendiesan]

FWIW, a note alleged to have been written by Justina has been released to news media by her parents. It's heartbreaking, however, there is no way of verifying that it was actually written by Justina about her treatment in Bader 5 (or Framington). We only have LP's statement that it is from Justina.

http://www.digitaljournal.com/pr/1851524

If this is legitimate, I wonder how it ties in to Jennifer's (?) comment on the Dr. Phil show about Justina being put into a harness and forced to walk, about her falling.

 

[jjenny]

If she is physically ill but they claim it's all in her head then it's not surprising to me if they are forcing her to do things she is not capable of doing.
By the way once the child is in DCF custody for 15 months they can adopt her out. Thankfully she isn't highly adoptable due to her age and sickness, but would it surprise anyone if DCF puts her up for adoption? The whole situation is so outrageous, other states are now trying to pass laws to prevent it.

“There’s no justification for that,” Rep. Kern said. “We want to make sure in Oklahoma that something like that never happens and that parents are the ones who have the fundamental right in the upbringing of their children.”

http://kfor.com/2014/04/15/bill-of-...al-say-on-childs-upbringing-but-not-everyone/

 

[wendiesan]

OMG. I hadn't thought about an adoption possibility--my mind was heading more towards a foster home since I don't believe DCF wants to unite Justina with her family. Not her parents, not her siblings.

 

[jjenny]

OMG. I hadn't thought about an adoption possibility--my mind was heading more towards a foster home since I don't believe DCF wants to unite Justina with her family. Not her parents, not her siblings.

I don't believe MA DCF wants to return her to her family either. They know she will talk about what went on if they return her, don't they?

 

[Linda7NJ]

I don't believe MA DCF wants to return her to her family either. They know she will talk about what went on if they return her, don't they?

There has to be a service plan in place....a road map they need to follow, to get her back.

Apparently, the parents aren't willing to follow it.

Their priority seems to be winning for themselves.
They want to be right more than they want their daughter home.

All IMO




Sent from my iPhone using Tapatalk

 

[Linda7NJ]

I don't believe MA DCF wants to return her to her family either. They know she will talk about what went on if they return her, don't they?

The sad truth is, at this point, the child has very little credibility.


Sent from my iPhone using Tapatalk

 

[jjenny]

Reading about the facility she is at. Seems like its goal is to help adolescents with substance abuse and psychiatric problems.
There are no doors in the rooms (so the youths don't barricade themselves inside). Students have to earn privileges such as watching TV. I have no clue what they have to do to earn these privileges. Police have been there on call numerous times.
So DCF stuck Justina in there. And somehow I doubt she is having a lovely time. This child has parents, siblings, a home, and yet DCF stuck her in this facility and it thinks they are protecting her?
http://www.wickedlocal.com/article/20090919/News/309199794/?tag=1

 

[Donjeta]

I'm having a hard time considering walking in a harness a form of cruel and unusual torture. It's a pretty standard method in physiotherapy when a person is barely able to walk, and physiotherapy is part of the treatment in mitochondrial diseases.

http://www.ncbi.nlm.nih.gov/pubmed/20722626

Aerobic exercise and physical therapy is useful to prevent or correct deconditioning and may improve exercise tolerance.

 

[jjenny]

I'm having a hard time considering walking in a harness a form of cruel and unusual torture. It's a pretty standard method in physiotherapy when a person is barely able to walk, and physiotherapy is part of the treatment in mitochondrial diseases.

http://www.ncbi.nlm.nih.gov/pubmed/20722626

DCF doesn't believe she has a mitochondrial disease.

 

[Donjeta]

DCF doesn't believe she has a mitochondrial disease.

Everybody who reads this thread probably knows that by now. But my point is that even if she has mitochondrial disease she might need physiotherapy or benefit from it, and letting her stay in bed all day probably wouldn't be good for her either way.

 

[jjenny]

Everybody who reads this thread probably knows that by now. But my point is that even if she has mitochondrial disease she might need physiotherapy or benefit from it, and letting her stay in bed all day probably wouldn't be good for her either way.

We don't know what they are doing to her at the facility. This facility is not designed for physically sick or disabled children.
It specializes in adolescents with psychiatric and substance abuse problems.
So it makes no sense to me whatsoever as to why DCF stuck her in there. If she needs physical therapy, Wayside sure doesn't seem to be the place for her to be getting it.

 

[Donjeta]

Damned if they do, damned if they don't... Either they torture her by making her exercise or they neglect their treatment by not giving her physiotherapy.

I have no idea if she's getting physiotherapy where she is now but it certainly isn't impossible. These days there are weird contraptions called cars that can transport physiotherapists to see their clients and clients to see their physiotherapists.

 

[jjenny]

Damned if they do, damned if they don't...

I have no idea if she's getting physiotherapy where she is now but it certainly isn't impossible. These days there are weird contraptions called cars that can transport physiotherapists to see their clients and clients to see their physiotherapists.

If you ask me, they shouldn't have done it at all.
What right did they have to remove the child to begin with?
Under the law parents have a right to follow the treatment they agree with in case of medical disagreement.
What right did BCH have to demand she follow their treatment instead of Tufts?