Saturday, February 22, 2014

The Medically Complex Child: How the State Can Kidnap Your Child

Justina BEFORE going to BCH.
Photo courtesy of
Addendum: Here's a link to all the financial supporters of BCH! Hit them where it hurts! Where the money is!! Contact all these sponsors and let them know about Justina! If they don't pull support.. we will
Link to Sponsors of BCH Also a Facebook page has been set up to rally and organize the people to help Justina and her family. Please visit the Free Justina Pelletier From Boston Children's Hospital! for more information.
Justina NOW at BCH. Who do you think was taking better care of her?
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Addemdum:  Here is one of the best overall articles I have read concerning the Justina Pelletier case. Click here.

I wanted to comment a little on the recent news story.  The custody case of Justina Pelletier.  If you have not heard about this case you should get involved!  There are so many stories on the internet at this point I would suggest googling Justina Pelletier to read up on the case.  This case is an outrageous abuse of authority of a hospital and the State! As the parent of a child that has been called "medically complex" (by several doctors) I understand the risk of taking my child to a hospital or a new doctor.  Why should I be afraid?  The Justina Pelletier case is just one example (there are several more) where the parents were trying to do the right thing but it ended horribly.  The parents had a diagnosis of mitochondrial disease from a doctor at Tufts and for the last two years had been treating their daughter according to her specialists.  When she got ill last year with the flu around Valentine's Day they took her to a local hospital.  The local hospital in Connecticut did not feel as though they could treat her adequately so they sent her on to Boston Children's Hospital (BCH) which is well known for its pediatric research and specialists.  Justina's doctor at Tufts, Dr. Mark Korson, (Head of Metabolic Services at Tufts) was on his way there to see her at BCH.  When Justina went through the emergency room a neurologist took charge of Justina's care before her doctor from Tufts could arrive.  The neurologist and then a psychologist determined Justina suffered from a psychological condition (Somatoform Disorder) and not from mitochondrial disease.  Once Justina's doctor from Tufts arrived he was told he could not take charge of Justina's care.  The parents of Justina then wanted to take her out of  BCH to another hospital for a second opinion.  They were told they could not and escorted out of the hospital.  It was only a day or two after the parents (Lou and Linda) were notified that the State of Massachusetts had taken custody of their daughter.  They were told they lost custody because they had over medicalized their daughter and this is a form of child abuse.  So, because their daughter did not feel well, they took the time to take her to various doctors in a hope to find out what was wrong. They researched possible causes of her illness and had her undergo various medical tests to try and determine the problem (which a diagnosis WAS made) and they were accused of the more encompassing form of Munchausen By Proxy (this is no longer the term used, the modern term is Fictitious Disorder By Proxy) called medical child abuse. 

What is the profile of a person accused of medical child abuse (from American Academy of Pediatrics)? 
1.  Life revolves around the child's illness. *If you have a child who is ill and you cannot determine the source of the illness I am sure your life, as a parent, would revolve around your child's illness too.  I know ours (John, myself, James and Margaret) revolve around Joseph.  We work really hard to be careful not to bring illness into the home for fear of Joseph getting critically ill.

2.  "Good parent" or Martyr. *So being a good parent, a concerned parent, can be used against you if a physician decides you are perpetrating medical child abuse.

3.  Not being relieved at a normal test result. *I have to admit I have been guilty of this. Why? Because I knew something was wrong but the tests were not showing the problem.  I have gotten into several arguments with neurologists telling me there is nothing wrong with Joseph besides him being premature. We did an MRI and the results were normal.  I was upset.  My gut, my mother's intuition, said there IS something wrong! So, in this case, I was NOT happy about a normal result.  I am glad Joseph's brain is normal. I really was, even at that time, but I knew something else was going on!  In the last year, with the additional tests we have run on Joseph, I have been vindicated.  We still do not know what is wrong with Joseph just yet but we have narrowed it down to something genetic, something metabolic or mitochondrial disease (the same disease that Justina was diagnosed with!).

4.  Promotes invasive tests and procedures. *Again, I am guilty of this!  I did not push for invasive tests without doing less invasive testing first.  I did not want to put my child through that.  I waited, and waited, and waited some more.  In the last year we did some of the more invasive tests.  I hated putting Joseph through it but on the other hand we now have more information and clues on what might be wrong with Joseph.  Even if this means we are finally able to get a diagnosis of "Joseph's disease"!

5.  Interest and expertise in medicine.  *Again, I am guilty of this.  I have learned a lot about medicine over the years.  I have spent a lot of time researching what might be wrong with Joseph.  I have bought, borrowed or read what I could of medical journal articles and medical textbooks.  Why?  First off I am a concerned parent wanting to find what is wrong with my child.  I realize that doctors, in particular medical specialists, are busy with a multitude of patients.  Even Joseph's primary care physician, the doctor who would know him best, still cannot know Joseph as well as my husband and I do.  Joseph spends the majority of time with us, not the doctor, so we know him and his behaviors best!  Second, I am a research scientist.  I may not be a medical person but I understand science and I can research with the best of people.  In reading medical textbooks on neurology I spent a lot of time underlining medical terminology and researching the definitions.  Just because I did not go to medical school does not mean I cannot understand a medical journal article or medical textbooks.  It takes me longer to read and understand than a medical professional but then again I am not conversant in the jargon.  I am sure a medical professional would have a difficult time understanding a geologic journal article (one of my majors) for the same reason...lack of understanding the jargon.

I could easily be accused of medical child abuse by a hospital that knows nothing about me, my history with doctors, or Joseph's complex medical history.  At a hospital they do not know you there and make a snap judgement about you and your child.  This is what happened to the Pelletiers.  The parents had spent a lot of time and testing to determine Justina's condition.  A medical specialist, highly recognized in his field, had diagnosed her. Dr. Korson was successfully treating her.  She was a fairly normal child, enjoying physical activities like ice skating and all of that was stripped away from Justina once BCH decided to interfere with her treatment.

Justina is not the only case and there can be SO many other reasons for the abnormal test results.  She is not the only case by BCH and not the only case in which a parent has been falsely accused of medical child abuse.  Once the State takes custody the horror and nightmare for the parents begins as it can emotionally and financially bankrupt a family!  Parents are typically given a gag order or are afraid to speak out. Parents fear child protective service will see speaking out as an attention seeking behavior and will use that as "additional proof" the parent(s) have Munchausen. Other cases where children were taken into State custody for questionable reasons include the Kirks case, O'Shell case, Velasquez Case, Huber Case, and there are many more but the parents are afraid to speak out!

I applaud Lou Pelletier and his decision to speak out even though there was a gag order on his case.  It has allowed other parents to come forward and talk about their case.  It has inspired me to speak out!  Lou has begged for help and people are starting to listen.  Please help!  Please call BCH, the mayor of Boston, tell anyone, tell everyone!  Go and sign the petition to the White House.  This petition states that the parents should have the final say in medical care.  Read below what Justina's parents were given by BCH as her new guidelines for care.  Would YOU accept that?  Would YOU allow NO second opinions?  Who else knows your child better than you???

Guideline of Care for Justina - Given to Her Parents by BCH
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Talk by Dr. Korman

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