The dark side of Boston Children’s Hospital

Justina Pelletier on the left with her parents Linda and Lou Pelletier. (Photo: Justice for Justina)

Boston Children’s Hospital very dark side

BOSTON — World renown Boston Children’s Hospital is home to some of the very best pediatric physicians in the world, however, for some families their lives have been ripped apart after their child was brought to the hospital.

Imagine having your child taken away from you because doctors at the famed hospital simply think your child’s illness is  in their head?

That’s exactly what happened to the family of Justina Pelletier.  She had been under a doctor’s care for Mitochondrial Disease at  Tufts Medical Center. Her older sister had been diagnosed with the rare disease as well.

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The disease is best described as an energy production problem that affects brain, heart and muscles. Symptoms range from intermittent difficulty thinking, remembering, moving and acting all the way up to extremely severe handicaps

When she was 14 years old Justina developed severe flu symptoms in February 2013 her concerned parents, Lou and Linda Pelletier, heeded the experts advice and their daughter was transferred to Boston Children’s hospital where her longtime gastroenterologist has recently transferred to. That decision has has forever changed their lives.

The transfer did not go as planned. Justina was evaluated by a neurologist and a new team who determined that the child did not suffer from Mitochondrial Disease.  He determined that her illness was all in her head. According to the elder Pelletiers, her medical records were initially not even reviewed.

Her parents tried to take her from Boston Children’s Hospital back to Tufts and the Children’s hospital prevented the parents from doing so.

Boston Children Hospital staff involved authorities, who seem to rarely question the expertise of the world renown hospital, and assumed custody of Justina. Her parents continue to fight for their parental rights and have set up the  Justice for Justina website.

After being held at Boston Children’s Hospital for almost a year, Justina was moved in January from the hospital’s locked psychiatric unit to a residential program at Wayside Youth and Family Support Network in Framingham.

The case of Justine Pelletier is not an isolated incident. Other parents who have had children afflicted with Mitochondrial Disease  have had the staff at Boston Children’s Hospital overrule that diagnosis and put the families through what they consider to be an unnecessary and invasive ordeal.

Jessica Hilliard’s young daughter Eithene was diagnosed with mitochondrial disease. Hilliard an educated woman with a scientific degree insisted that her daughter who suffered from severe symptoms  be tested for it. She was met with resistance. After a diagnostic test lent support that her daughter did in fact have the rare disease, Boston Children’s Hospital physicians did not release the test results to the mother for many months because the hospital staff just did not believe in the proof before their very eyes.

Hilliard’s daughter died . She was told to prepare for end of life and wanted her child to be placed in hospice care. She requested that her son be tested for the disease since he was exhibiting symptoms.  Instead the hospital’s child protection team got the state’s Department of Children and Families involved.

In the end she was able keep custody of her son, however, she went through a terrible ordeal with DCF.

The Pelletier’s and Hilliard have been accused by Boston Children’s Hospital staff of being too involved in their child’s care, something they consider that a huge red flag.

The Blaze reports that another mother, Patty Mele, experienced a similar situation more than 20 years ago at Boston Children’s Hospital over her son’s case who was afflicted with the same disease.  The hospital determined that her involvement in her son’s treatment was suspect and local authorities were contacted.

Apparently the experts st Boston’s Children’s Hospital do not value parental input and involvement when it comes to Mitochondrial Disease because they believe they know best.

A former employee at the Boston Children’s Hospital has her own theories and believes that the hospital targets middle to upper class families.

Are parents supposed blindly turn over control of their children’s lives to doctors simply because they are expects simply because they fear they will lose custody of their children?

The family of Justina Pelletier was crushed when a Judge ruled Monday that the teen will remain under psychiatric care and encourages anyone wishing to lend support to sign a petition on the Justice for Justina website.

Related articles

• Judge Continues to Refuse to Release 15-Year-Old Girl Held in Psychiatric Care Against Parent’s Wish
• http://www.madinamerica.com/2014/03/discussion-justina-pelletier-boston-childrens-hospital/
• Justina Pelletier Case of Teen in DCF Custody Returns to Court

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