DC - Justina gets standing ovation from Congress

[annahanna]

I agree with SweetMom that asking for prayer for Justina is fine - even a very positive thing. The power of prayer is very real - IMO. I am always concerned when requests for donations and gifts start. Although I completely understand that illness and hospitalization are very expensive, and health insurance does not cover it all, I also know that the resources out there for families of ill children are tremendous. (And sometimes aggressive. We are very fortunate to not need financial assistance and I have been put in the position of almost feeling rude in turning it down at times.) Depending on Justina's diagnosis, she may qualify for disability through SSDI which would put her on Medicaid and eventually Medicare for her medical expenses. Depending on family income, this would make her eligible for a monthly SSDI check. Organizations like the Ronald McDonald House Charities, all of the major airlines, many of the major hotels, most drug companies, and several independent foundations have programs that help the families of seriously ill children. Make-A-Wish is well known, and a number of charities shower hospitalized kids with gifts this time of year. (My son got his monthly hospital treatment on Wednesday and left the hospital with 2 Christmas gifts.). I think it is wonderful when individuals and corporations sincerely want to open up their wallets and help sick kids. I just don't think it is appropriate for anyone in her family to be asking for gifts.

*ETA:
I don't want the above to sound like I am ungrateful. I am very thankful for the position we are in. I am also thankful for the very generous individuals, groups and corporations that assist sick kids. I am thankful to be able to donate my time and treasure to one of these groups, and to have the knowledge to direct parents who need help to some of the others. In this giving season, there is an abundance of love and sharing taking place in children's hospitals.

 

[txsvicki]

I think it's downright tacky for the family to post the home address in case someone wants to send Justina something. Send something, but we won't tell you what's going on with her. Does Justina even want her home address given out online or pics of her lying in bed with bald spots and looking awful.

 

[SeeAlice]

Nothing new has been posted for a while on the Miracle site; nothing new since the Meghan Trainor item. But when the Rev. gets into the act, it is usually followed up by a new heart-tugging pitch for donations. I strongly doubt that Pennsylvania DCF has gotten involved...that would trigger a flood of news stories and outraged comments.

Not sure if Jennifer or whoever was trying to make it look like Meghan was there especially to see Justina. She wasn't.

I'm blessed to have children whose health is normal now but without the March of Dimes, Children's miracle Network, and the teaching hospital near my town, I probably wouldn't have them at all. Many years before that, CMN and the same hospital tried valiantly for months to save my little sister's life. She succumbed to the cancer she had, but fortunately through their works and others, children have a better chance of surviving now.

I have so much respect for everyone who works in hospital pediatrics, from NICU on up. I myself witnessed a child being turned over to CPS during her hospital stay. The hospital did everything possible to appease the child's bio parents but they did very stupid, unhealthy things to that 3 year old IN THE HOSPITAL. When it became apparent to all of us, including other patients' parents, that her mom was going to try to snatch her and make a run for it, the cops locked the place down. Turned out, they had pulled a similar stunt in a nearby state.

Sorry. TMI about my own personal experiences. I want people to realize what national treasures our pediatric hospitals are. I HATE what Justina's family has tried to do to Boston Children's Hospital, all in the name of covering for their own shortcomings and dysfunction. Justina has learning disabilities and I don't know what all else. Maybe developmental disorders or autism spectrum. I don't think her father will ever admit that to himself. Not sure if he thinks he can find a magic bullet to cure all of that at once or what.

"It's 100% physical," Lou says. No, it isn't. I'm sorry she's not as perfect as he might wish for his child, but she is his daughter. He can and should love Justina for who she is now. The whole family will be healthier when they accept that she has bowel distress (like millions of others), undoubtedly aggravated by being rushed to ERs when one of them gets overwhelmed or stressed out. She can learn to cope with it. They can, too. They all need intensive individual and family therapy or counseling.

How can they do this to Justina and her three lovely sisters? It's sick, IMO.


p.s. Got a bit too emotional. Please let me know if I should delete.

 

[SeeAlice]

A new posting today on the Miracle site thanks supporters for sending gifts and cards to Justina and then says more would be welcome and gives their home address. But not a word on her current condition, diagnosis or treatment. So we still do not know why the Rev. rang the prayer alarm bell the other day.

If they had not alienated virtually everyone in their hometown, that's who would be sending Justina cards, gifts, providing them all with emotional support, respite, and the like - the family's friends, neighbors, members of their church, people from the girls' schools, skate clubs, Lou's clients, Linda's decades of skating students.

Full disclosure: My paternal relatives are from the area and many still live there. I'm related to someone who has been referred to in the media as one of Justina's friends.

 

[sweetmom]

I don't know how many of my fellow Websleuthers torture themselves by reading the comments on the Miracle site or those from stories in the mainstream press. They are frightening, depressing and a testament to the gullibility of so many people. PT Barnum, or whoever it was that actually said it, got it right when he remarked that "there's a sucker born every minute" and Mencken nailed it when he said "no one ever went broke underestimating the intelligence of the American public."

That is why I am so grateful to read posts by people such as Annahanna and SeeAlice who know the reality of having a chronically ill child and the wonderful work that America's pediatric hospitals do for them and can talk about it with such authority.
There are many things about how the Pelletiers behave that trouble me, but their deliberate trashing of those hospitals, done IMO to cover up there own bad judgment, is high on the list.

And the lack of community support and interest in their case is real -- I live in the same town and it's obvious -- and IMO, a very telling comment on this whole sad situation.

 

[Curiosum]

If they had not alienated virtually everyone in their hometown, that's who would be sending Justina cards, gifts, providing them all with emotional support, respite, and the like - the family's friends, neighbors, members of their church, people from the girls' schools, skate clubs, Lou's clients, Linda's decades of skating students.

Full disclosure: My paternal relatives are from the area and many still live there. I'm related to someone who has been referred to in the media as one of Justina's friends.

This is a very good point. My husband is also a pediatrician. We practice in a relatively rural area and admit at a community hospital. Our hospital has a lot going for it but it isn't an academic tertiary care center or a true children's hospital (in fairness, it never has claimed to be) so the reality is that there are some children we stabilize and transfer to children's hospitals so they can have the benefit of pediatric subspecialty services. Although we've never had parents truly refuse transfer after they have understood why it was needed we have come across many families who were overwhelmed by the financial aspects of transfer. For some of our patients' families even finding gas money to travel two hundred plus miles to the children's hospital to be with their child is hard to imagine. We have personally probably spent somewhere between 1-2K this year on gas cards for families where we know the hardship is there. I know our church (and other churches in the community), our local rotary, and even our hospital auxiliary also have put together things for families in the community with extraordinary medical needs. We've supported several of these projects financially because we're blessed to be in a financial position to do so and it is part of being part of the community. Perhaps the greater Hartford community just doesn't understand the concept of community but I suspect that it is more likely that this family has fully alienated their community as you have suggested.

 

[sweetmom]

This is a very good point. My husband is also a pediatrician. We practice in a relatively rural area and admit at a community hospital. Our hospital has a lot going for it but it isn't an academic tertiary care center or a true children's hospital (in fairness, it never has claimed to be) so the reality is that there are some children we stabilize and transfer to children's hospitals so they can have the benefit of pediatric subspecialty services. Although we've never had parents truly refuse transfer after they have understood why it was needed we have come across many families who were overwhelmed by the financial aspects of transfer. For some of our patients' families even finding gas money to travel two hundred plus miles to the children's hospital to be with their child is hard to imagine. We have personally probably spent somewhere between 1-2K this year on gas cards for families where we know the hardship is there. I know our church (and other churches in the community), our local rotary, and even our hospital auxiliary also have put together things for families in the community with extraordinary medical needs. We've supported several of these projects financially because we're blessed to be in a financial position to do so and it is part of being part of the community. Perhaps the greater Hartford community just doesn't understand the concept of community but I suspect that it is more likely that this family has fully alienated their community as you have suggested.

Your last point is right on the mark. Living here, I can tell you that West Hartford is a town full of giving people who do care about those suffering dire or chronic illnesses, and the many fundraising events that take place attest to that. In spring and fall, you can hardly go out for a walk without bumping into a charity walk or 5k run or some such event. Neighbors have raised money for playgrounds for disabled kids and a ball field as well. But it is also a town with a lot of well-educated professional people who, IMO, just do not accept the Pelletiers' version of Justina's problems. My town is a caring town, but not a gullible one.

 

[liljim]

there are a lot of legitimate issues regarding the donations and the publicity in cases similar to this, but for me the biggest one is that when there clearly is a psychological component to the situation, as there MIGHT be in this case, then the publicity and donations can clearly provide an incentive for the person to not get well, and it can have a significant effect on the people around them to allow the situation to continue.

regardless of whether you think it applies to this specific case it certainly is a consideration in these situations with the rise of the internet.

this isnt an indictment of anyone, it is more a comment on psychology and human nature, the person may or may not even be aware of the effect these things are having on them. it does not have to involve any malicious intent or deception.

 

[sweetmom]

there are a lot of legitimate issues regarding the donations and the publicity in cases similar to this, but for me the biggest one is that when there clearly is a psychological component to the situation, as there MIGHT be in this case, then the publicity and donations can clearly provide an incentive for the person to not get well, and it can have a significant effect on the people around them to allow the situation to continue.

regardless of whether you think it applies to this specific case it certainly is a consideration in these situations with the rise of the internet.

this isnt an indictment of anyone, it is more a comment on psychology and human nature, the person may or may not even be aware of the effect these things are having on them. it does not have to involve any malicious intent or deception.

This is very much worth exploring. Justina has been taught by all the hoopla that so long as she is sick, cannot eat normally, cannot move her bowels, cannot walk, cannot swallow --- I am sure I have left out a few symptoms-- she will be "rewarded" by lots of attention, gifts, parties in her honor, visits by celebrities, etc. , not to mention money that the family gets to spend with no strings or oversight attached.
Whether or not the family intended to send this message is beside the point. It has been sent. The sad and disturbing conclusion that can be drawn, IMO, is that unless the family gets the satisfaction of having their beliefs about her illness corroborated by the endless tests and hospitalizations, they are likely to feel better off, emotionally and IMO, financially, if Justina stays sick. That, IMO, is tragic. And, IMO, that is why complaints of medical abuse were lodged against them by doctors in CT, at Tufts and at BCH

The fact that the CT DCF did not say they could definitely see abuse may, sadly, reflect nothing more than DCF's inability to do enough investigation. IMO, it is ironic that so many of those who have been excoriating the CT and Mass DCFs for other reasons are happy to take their word in this instance.

 

[stormshine]

Hello everyone. I'm new to this forum, but I had a couple of observations about this case. I've been following it since last year (I had some facebook friends who were rather passionate about it, but I thought there was a lot more to the story).

In the latest pictures (from the Meghan Trainor visit), she looks really, really, puffy. I'm not a medical expert in any way, but I did go through major surgery and I had that same sort of puffiness right after. That, coupled with the fact that she was in a hospital gown (rather than sweats or pajamas) makes me wonder if she did have some sort of surgery, which might be what Rev Mahoney's tweet was about. I also suspected it might be about CHOP wanting to discharge her and the family disagreeing.

 

[sweetmom]

Hello everyone. I'm new to this forum, but I had a couple of observations about this case. I've been following it since last year (I had some facebook friends who were rather passionate about it, but I thought there was a lot more to the story).

In the latest pictures (from the Meghan Trainor visit), she looks really, really, puffy. I'm not a medical expert in any way, but I did go through major surgery and I had that same sort of puffiness right after. That, coupled with the fact that she was in a hospital gown (rather than sweats or pajamas) makes me wonder if she did have some sort of surgery, which might be what Rev Mahoney's tweet was about. I also suspected it might be about CHOP wanting to discharge her and the family disagreeing.

That's a good point about Justina wearing a hospital gown in the most recent Miracle website photo. It could well indicate surgery, or perhaps it is what the hospital prefers its patients to wear. Given that the family is not posting any details lately about her condition, it's noticing and commenting o n little details like that one that make websleuthing so interesting!

 

[annahanna]

On December 19 @ 1:53PM, someone asked if there was anything special Justina liked of collected. Jennifer answered within 90 minutes with gift suggestions. On December 18 @ 3:08PM, someone asked if they could provide mailing information on other hospitalized children who would like to receive cards and mail. To date, there has been no response from the family to this question. Not even a "we will look into it" or a "gee, we are so sorry we can't." I guess this tells us how committed the family is to helping other hospitalized children. In the past, the family has insisted this was not just a fight for Justina but for all at risk children. Obviously not.

It is December 22nd and there has been no mention of getting Justina home for Christmas. Most of the units at CHOP are clearing out. Kids that can go home are going home. Kids that need routinely scheduled treatments are (whenever possible) getting their schedules adjusted so that they are spending as little time in the hospital as possible. Things in children's hospitals do not stop over the holidays, but they do clear out of all but the most medically needy patients. Staff is reduced and many diagnostic and routine tests and procedures are put on hold for,a few days. I hope that Justina is on her way home and that news of this is just being withheld for some reason.

 

[SeeAlice]

Great observation, annahanna. Hospitals try to discharge all but the most critically ill patients before Christmas so the parents, patients and staff can spend the holiday at home with loved ones. (We weren't that fortunate, but NICU was like a ghost town compared to how full it usually was. I'm getting a little choked up remembering that Christmas.)

 

[annahanna]

We have been fortunate to never spend Christmas Day in the hospital. I am sorry that you had to be in the NICU with your little one. My son has been inpatient over other holidays and during the dreaded July 4th time period. For anyone that does not know, July 1st is the start date of new residencies, fellowships, and when new doctors become attending physicians. Many people in the medical community will tell you to avoid surgery and hospitalization during the first week or two of July. Forth of July weekend is particularly concerning because of the holiday and vacations. We had a good experience but some apparently do not.

 

[sweetmom]

We have been fortunate to never spend Christmas Day in the hospital. I am sorry that you had to be in the NICU with your little one. My son has been inpatient over other holidays and during the dreaded July 4th time period. For anyone that does not know, July 1st is the start date of new residencies, fellowships, and when new doctors become attending physicians. Many people in the medical community will tell you to avoid surgery and hospitalization during the first week or two of July. Forth of July weekend is particularly concerning because of the holiday and vacations. We had a good experience but some apparently do not.

I've heard that, too, but wrote it off as black humor from the medical profession. But from now on , I will take it more seriously. Here's hoping none of us are going to need to think about this anytime soon...or ever.

It would not surprise me, however, if we were to suddenly see an influx of new Pelletier family photos of them all clustered around the Christmas tree at home...at least for a few days. For Justina's sake, I hope she can go home for the holidays, if not permanently.

 

[annahanna]

Snipped By Me:

It would not surprise me, however, if we were to suddenly see an influx of new Pelletier family photos of them all clustered around the Christmas tree at home...at least for a few days. For Justina's sake, I hope she can go home for the holidays, if not permanently.

I hope you are right! :christmastree::santahat::

 

[sweetmom]

I hope you are right! :christmastree::santahat::

[/I

I am loving those emoticons! Or are they emojis? Whatever the terminology, they are adorable. Merry Christmas, one and all!

 

[sweetmom]

Well, guess what. The Miracle site says Justina is home, just as we predicted, and there are photos of her and her sisters and the Christmas tree. In one, you can clearly see she has a nose tube (for feeding?) but she is smiling and looks happy. The text says she is home, but does not make it clear whether she is now home for good...it says she still has a long way to go for recovery. Let's hope she has a much healthier 2015.

 

[SeeAlice]

Oh, please some Justina groupie, ask about her "recovery!" (Wishing out loud.) Ask what ails her and what treatment protocol Children's Hosp of Philly is pursuing.

Anybody know what the statistics for are for 16 year olds being on a feeding tube with no apparent brain injury/damage, no neuromuscular disease and no diagnosed upper GI problems? I know that feeding tubes are sometimes medically necessary but I confess that I have suspected people I know of being... well... lazy isn't the correct word but something along those lines. There are too many MBP & MCA cases that feature feeding tubes, IMO.

All I can think of is those poor Parker kids in Grant's Pass, Oregon. Has their "mother" gone to trial yet? I read somewhere that the kids are all thriving now in other homes.

 

[SeeAlice]

P.S. I have a friend in a medical rehab facility (post- heart surgery) who was given a one-day pass for a visit family with family at home today. Could just be a special outing for Justina.