Story: Our story is earily similar to the Justina Pellitier story. Actually it involves some of the same doctors: Dr Carol Jenny and Dr Tom Roesler who led the movement to change the term Munchausen Syndrome by Proxy to Medical Child Abuse have been tarred and feathered out of New England and set up shop in the Pacific Northwest. That is where our story began.
We are a family from Southern California but we traveled to Seattle in March 2017 for a 4 day whale watching vacation. Both our children have a diagnosis of a genetic connective tissue disorder called Ehlers-Danlos Syndrome. While on vacation our 10 year old son, Zachary, became acutely ill and was taken to Seattle Children’s Hospital. He was first in the emergency room then admitted to treat an infection. The staff at Seattle Children’s spoke on the phone with our doctors from Los Angeles Children’s Hospital several times in the first 24 hours: Absolutely no questions or concerns about Zachary’s diagnosis or chronic management/treatments. Then, after two mistakes that nearly cost Zachary his life and us talking to hospital administration about our concerns everything totally changed.
The staff at Seattle took over Zachary’s care: even his routine chronic medications and feeding plan: They totally changed everything and stopped all medications cold turkey. We were blocked from contacting our doctors back home in Los Angeles. Then, after 10 days of not communicating with us they made a different diagnosis: Seattle claimed all of Zachary’s diagnosis were fabrications of the mother and that the medical record did not support one single diagnosis. Seattle even went so far as to claims they had spoken to the Los Angeles team again and now those doctors agreed with Seattle that everything is made up. ( there is no record of this phone call but since Seattle implicated CHLA in this, the implication alone made our doctor’s legal team instruct them to not communicate with us!) Seattle Children’s accused me, a registered nurse, of Munchausen Syndrome by Proxy and seized our child from our care. We were forced to leave Zachary alone in the hospital over 1000 miles from home while we went to court. We thought we could just show up to court with our medical record and that would be the end of it: not even close.
In King County Washington court the allegations were long and covered more than just making up diagnosis. Seattle Children’s child abuse team only had to claim they had read the medical record and no support for any diagnosis was made for the court to believe it. The court never asked for any of the medical records to be presented to the court or for a third party to review the records. We hired private attorneys and were never given a chance to defend ourselves what so ever. Seattle Children’s Hospital ended up keeping Zachary in the hospital for 24 days for a 14 day course of antibiotics that could have easily been given at home: The reason they stated the extra hospitalization was necessary was to ‘demedicalize him’
During de-medicalization, Zachary was taken off his safe diet and all prescribed medications. Seattle Children’s never called one specialist to asses the situation: The child abuse team led all these drastic changes. When he got rashes, itchy and upset stomachs ( well charted by the Seattle Children’s bedside nurses) the child abuse doctors continued to report there were no side effects and Zachary was doing 100% fine. Seattle Children’s even contacted our insurance company and attempted to tell them Zachary was a victim of abuse and if the family had returned to any previous specialists or attempted to fill any previous medications that Seattle abuse team and CPS were to be informed immediately.
The case was transferred home to Orange County California under the UCCJEA. Instead of making a new investigation and calling the local physicians who care for Zachary, CPS simply copied the complaint as written by Seattle Children’s as true and continued to detain the children form me. My husband got to keep the children’ in his custody in an agreement that he would follow the doctor’s advice. Over the course of a year, all diagnosis have been re-confirmed by independent doctors but CPS has not lifted the restrictions and allowed me to go home. My husband flew the children to Rhode Island to see an expert on Ehlers-Danlos Syndrome: That experts report was suppressed from the court. We have not been given one single evidentiary hearing.
The court offered to amend the allegations against us to only read ‘Failure to Protect’ and ask us to submit to the allegations of Failure to Protect to move forward with a case plan for reunification. We did originally submit to this with a no contest plea. After entering this plea we learned that the case plan did not involve reunification at all and CPS was basing the case plan off the original, unamended allegations: This included a psych report based on the original allegations which reads there is an extremely poor prognosis for these cases. So now, we are withdrawing our consent to submit and back to waiting for a hearing!
My children are the ones suffering form this tragedy. They cannot attend physical therapy or doctors and treatment for their Ehlers-Danlos Syndrome. The used to live in a loving and stable two parent home and my son was home schooled. Now they are from a single parent home and they are forced by court order to attend public school. We have spent every dime we find getting specialists and legal fees. As things stand right now there is very little hope of reunification for the next year: Two year apart without one single hearing or trial. I will do everything I can to educate the public about the legal atrocity that is our current child protection system. Something has got to change.