Like many, I have been following this case via the few media prints I can find. These are just my opinions on what might or might not have happened based on what I have read thus far. I am still hoping this isn't as bad as it seems to be, but I am losing hope. This looks very very bad for patients suffering from Mitochondrial Disease and other rare diseases.
As everyone follows the case of Justina,(15 year old jailed in the mental ward of BCH's for 10 months now because the Drs felt the mito was a false diagnosis and the child was actually mentally ill as the primary,not Mito)we have all noted the term “overmedicalizing” that has been used as justification to jail a 15 year old child in a mental institute.
1) Boston Children's accuses Justina's family of “overmedicalizing” , but who prescribed the medications? Who approved the multiple surgeries? Who prescribed the surgeries? From what we have learned in the media, Justina had been seen by the same set of Drs. for years. She had been seen by Drs who are accredited and licensed by the same boards that license Boston Children's Hospital's Drs. Genetic testing had confirmed her diagnosis(less then 20 percent are genetically proven today). I consider myself as a reasonably intelligent person, but when it comes to medicine I trust the Drs. Doctors are the ones with the education,training and experience to diagnose and treat,not the parents. Parents are just parents and not Drs. How are we, the parents supposed to know whether a Dr. is right or wrong? If a Dr. tell's me my leg is broken, should I hobble over to another hospital to make sure? Is there a 1-800 number for Boston Children's I am suppose to call so they can make the final decision on my broken leg? Apparently they feel no one should accept a diagnosis unless it comes from them. If the Dr. makes a decision their peers don't like, should the parent and patient be punished? What is that oath again? "First, do no Harm."
2)How often are we told as Parents that we need to "trust" the judgement of our children's Drs, because they "know" better then we do? So, these parents trust the Drs and then another set of Drs. punish and destroy a child and a perfectly healthy family because they did exactly what we are all told to do? How often are we told NOT to Dr. hop? Meaning, don't go running around getting 2nd and 3rd and 4th opinions because you are accused of Dr shopping or diagnosis shopping? These parents by all accounts did EXACTLY what every Dr.(except BCH Drs.) see's as ideal for patient care, continuity of care.
3) What is “overmedicalizing” ? Is it defined somewhere?
4) I am baffled. From what I am reading and my opinion on this,it seems a parent is told by a Dr or a multiple team of Drs.(all licensed by the same association mind you)that their child is sick. The Drs. then prescribe treatment A,B, and C. Another Dr. doesn't agree so instead of going to the licensing Association or FDA(who approves the medical viability of these treatments)or even the prescribing Dr for confirmation, they basically tell the parents they are bad for listening and following the orders of Drs who happen to have very good reputations.. Insanity.
5) A child that was previously doing well is now very ill. A child who previously had the comfort of home and family now has 4 cold walls and no love, no home. The only thing Boston Children's has accomplished? They are abusing the child in my opinion,surely the rapid decline of health was not their intention of an outcome from changing her diagnosis?. The child is clearly in failing health under their care. The child has had her family and friends ripped from her when in fact all the medical research indicates that patients will ALWAYS fare better with a close supportive family.
6) The burning question, "Why?" Could the Drs. be so petty, so arrogant that they are willing to run around destroying families, and children to get their point across that they "think" their medical opinion is the only valid one and if you are treated anywhere else in the Country the diagnosis is WRONG until Boston Children's rubber stamps it? Insane right? But it is sounding more and more like that is exactly what is happening.
7) If you have read my blog, you know I have very strong feelings about “overmedicalizing” . I happen to agree that there are cases of “overmedicalizing” in the Mito population. I have seen it. Most of you have seen it too. I blame the IDIOT DRS not the parents. However, that is not looking like the case at all here.(overmedicalizing is rare even in the mito population) If the Doctors disagree with the diagnosis, shouldn't they go to the Dr? Shouldn't they go to the Medical board? How can parents be too uneducated to understand medicine but be held accountable for the treating Drs medical decisions? Why on earth jail a child to make their point? It is back firing on them,I suspect they thought they could "prove" that Justina was perfectly healthy- instead the longer she is in their care the sicker she gets.. How could any Judge decide that they are doing a good job caring for her? I mean, the very fact that she is getting worse is clinical EVIDENCE that she was sick to begin with and that whatever treatments she had been receiving were clearly doing a much better job keeping her stable then the mental hospital is doing.. But I am just a parent.
8) Justina needs to go home. The Judge needs to follow the law. CPS should be ashamed. Everyday I see another news article of children starving, murdered, abused.. Instead of intervening and saving children that need saving, they decided to partner with a hospital to "make a point". From all appearances and accounts thus far,they have sat there and watched Justina's health fail and yet do nothing to protect her, they seem to be more concerned about supporting the Hospital then the child. They are not doing their job. The Drs. have failed. The Judge failed. CPS has failed. Justina has suffered horribly. Send Justina home. Who knows how their "treatment" has permanently damaged her health?
A case of God Complex? From what we are learning from the Media,it might be the only reason.. Frightening.
A parent is no longer the decision maker for our children's health. For our Children's education. Is the future full of Justina's? If our children become sick, do we automatically lose our parental rights?
As always just my opinion. If this was the first case like this, I might automatically agree with Boston Children's- after all they heal children right? Unfortunately, this is one of too many to count.
As parents face Drs. appointments next week trying to find help for their sick children, who do they trust? Which Drs. are about politics before medicine, and which ones put our children's health before politics? Houston, Seattle, Boston, Los Angeles, - no where is safe. A GI Specialist, a Mito Specialist, a Pediatrician, a Family Dr- there is no way to know which one might falsely accuse you.