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When disagreements between medical professionals and advocacy for rare diseases result in the wrongful removal of children

             

When disagreements between medical professionals and advocacy for rare diseases result in the wrongful removal of children

 By: Dr. Jessica Nitschke – Research Fellow at Stellenbosch University

Three years ago, Kendal’s two young sons (then aged 4 and 6) were undergoing care for life-threatening genetic conditions in a hospital in Massachusetts. They were taken from Kendal’s custody in the middle of the night by the state following a disagreement about their medical treatment. It’s a phenomenon known as “medical kidnapping”. Kendal was investigated, but evidence of child abuse or neglect was never found. Yet, three years later, the children remain in foster care on the other side of the country (Arizona), begging to come home. This terrible situation is due to a poorly designed law, ineptitude in applying the law, and the failures of a justice system biased against poor people, people with disabilities, and single mothers. Kendal has long since exhausted her savings, but she is still fighting for her day in court to bring her children home. Her initial hearing is on October 29, 2022 and, in the worst-case scenario, to see her children one last time before they are put up for adoption.

The Long Version:

Kendal is an alum of Georgetown University, where she studied Classics and Archaeology as an undergraduate, taking many of my classes and coming with me to dig in the field in Israel. After graduating, she went to law school at George Mason University to pursue Cultural Heritage Law. She had her first son while in her first year. Later, while pregnant with her second child, she unexpectedly became a single mom. Nonetheless, she still managed to juggle motherhood, a part-time internship at the Virginia Commonwealth Attorney’s Office, and a full course load, graduating with a 4.0. And she did it all with her elder two-year-old son battling a life-threatening genetic disease called Common Variable Immune Deficiency, as well as a genetic lung disease, Primary Ciliary Dyskinesia (similar to Cystic Fibrosis). When her second child was born, all seemed well at first. But, then he developed severe failure to thrive from a partial lack of a pancreas and required pancreatic enzymes to live. He started aspirating food into his lungs and needed a G-Tube and J-Tube to prevent choking. Like his brother, he was diagnosed as immune-deficient with specific antibody deficiency and presumed primary ciliary dyskinesia. He suffered dangerously low glucose levels, struggled to walk, and eventually was found to need emergency brain surgery which could only be done in Boston.

Kendal set aside her career aspirations to focus on her sons’ health. The family headed to Boston. All seemed promising for a while as the doctors worked to determine the best way forward. But then, doctors started to disagree about the nature of the boys’ illnesses and the direction of further treatment. As a lawyer, Kendal started questioning the piles of papers the hospital asked her to sign. Before she knew what was happening, the unthinkable happened: the children were taken from her custody by state authorities in a textbook case of “medical kidnapping” The boys were removed from their specialized treatment and put into foster care. Since then, for three years, despite her limited resources, Kendal has been trying to undo this injustice, meeting every demand the system has required of her. She has submitted herself to numerous evaluations (all of which she passed). She has kept a low profile on social media. She has presented evidence from doctors and colleagues testifying to her children’s diagnosis and her fitness as a mother. On the few visits with the boys she has been allowed (and could afford), she has adhered to the state’s absurd restrictions, such as “no talking of memories” and “no reading books to the children”.

Kendal has been a lawyer, teacher, and government worker, and has no criminal background or domestic abuse history. No evidence or charge of child abuse or neglect was ever put forward by the state for either child. Her children have received real diagnoses of life-threatening conditions verified by doctors at both Children’s Hospital of Richmond and Boston Children’s Hospital; these diagnoses were not based on a mother’s description of symptoms but on biopsies,      x–rays, CT scans, lab work, and genetic testing. Yet, because of a failed and flawed justice system, the boys, now aged 7 and 9, remain in foster in Arizona. They are not receiving the treatment they need for their conditions, and their health is declining. They beg to come home.

Kendal is still fighting and finally, after three years, has a trial set to begin on October 29, 2022, where the boys’ fate will be decided (either returned to her custody or given up for adoption). She has exhausted her savings (and then some). to secure further expert testimony to persuade her case. The worst-case scenario, to see her boys one final time, before they are put up for adoption.

Many of Kendal’s friends and I followed her and her sons’ journey over the years on Facebook, from the joy at their birth and growth to the stress and sadnesssurrounding their illness, admiring the indomitable spirit shown by both these boys. I have included a few pictures from that journey below, I hope you will at least read the linked articles below. If this can happen to someone as well educated and committed to her children’s well-being as Kendal, it can happen to anyone.

Read more about medical kidnapping and some recent high-profile cases:

If You’ve Never Heard of Medical Kidnapping, Pay Attention (Epperson Law Group)

https://www.epplaw.com/blog/if-youve-never-heard-of-medical-kidnapping-pay-attention/

The New Child Abuse Panic (NYTimes)

https://www.nytimes.com/2015/07/12/opinion/sunday/the-new-child-abuse-panic.html

When Medicine Attacks Motherhood (The Coalition Against Pediatric Pain)

https://tcapp.org/category/parents-talk-blog/

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