In Massachusetts, we are extremely fortunate to have the world’s best medical institutions and facilities (medical schools, teaching hospitals, rehab centers etc) practically at our fingertips. And when it comes to finding a specialist for a complicated or rare disorder or disease, you probably wouldn’t want to be anywhere else in the country. That said, at least two premier Boston Hospitals–Children’s Hospital and Massachusetts General Hospital–have a dark side to their otherwise sterling reputation. I have had several cases involving very serious but controversial diagnoses of children where the parents unwittingly brought their child to Boston Children’s Hospital and/or Massachusetts General Hospital and wound up being investigated by the hospital’s Child Protection Team and the Department of Children and Families, and in two of my cases, actually taken to court by DCF, which sought custody of their child. In one case, my client was also criminally charged and later acquitted. In that case I represented him in the Care and Protection petition.
Not too long ago, Shaken Baby Syndrome (SBS) was the controversial diagnosis du jour. Think Louise Woodward (the “nanny” case). Shortly after that highly publicized case, I had my own SBS case in the Boston Juvenile Court, in which my child client’s mother was accused by the Child Protection Team at MGH of deliberately (and violently) shaking her. More recently, I represented a father in Norfolk County Juvenile Court who was not only petitioned by DCF in a Care and Protection case but charged criminally for several A&B related charges. In both cases, the parents brought their child to MGH for emergency medical attention and, because the child presented with the so-called SBS triad of retinal haemorrhage, subdural hematoma, and acute encephalpathy, the Child Protection Team and DCF quickly became involved. Since the Woodward case there has been a significant amount of research challenging the efficacy of the Triad, rendering the SBS diagnosis highly questionable. (I plan to write exclusively about Shaken Baby Syndrome in a future blog.) Suffice it to say, in my Boston case, the mother was quickly reunited with her baby after a month-long temporary custody (72 Hour) hearing, a result I strongly supported. In the other SBS case I mentioned, my client father was acquitted by a jury. Still, due in part to an over-reliance on the opinion and reputation of Children’s Hospital and MGH, the juvenile court judges in both of those cases made a threshold finding that DCF had met its burden of proof that the children were the victims of SBS. (Juvenile Court judges have been slow to react to the new research casting doubt on the SBS diagnosis. In future SBS cases, it is crucial for counsel for parents to quickly line up a top notch expert that is aware of the new data and research before a custody hearing or trial.)
More recently, I have had two other highly controversial cases involving Mitochondrial Disease and PANDAS. My parent clients were accused by Children’s Hospital of neglecting their child when a disagreement over their respective child’s diagnosis and recommended course of treatment arose. Not only did both cases involved a diagnosis not universally accepted in the medical community (the aforementioned mitochondrial disease and PANDAS), sadly, in both instances the parents previously lost a child due to illness or disease. In my Mitochondria case, the parents were merely seeking to RULE OUT Mitochondria for their son and simply wanted him tested for it because their daughter had died from the disease not long before (after spending most of her short life in Children’s Hospital). Unbeknownst to the parents, an internal battle within the multi-disciplined treatment team was erupting (some specialists thought the child should be treated or at least tested for Mitochondria and at least one strong-headed doctor believed otherwise and even accused the mother of Munchausen by Proxy) and enlisted the services of the Child Protection Team (CPT). Frighteningly, for several months, after her son was discharged from Children’s, the CPT monitored my client’s blog that chronicled her son’s illness and suspected Mitochondria! The CPT filed a 51A against my client wrongly accusing her of seeking unnecessary medical treatment, and worse, suggesting that she was deliberately sabotaging her son’s health (Munchausen). Fortunately, after several meetings with a seasoned DCF investigator and my encouraging the investigator to talk to the parent’s treatment team outside of Children’s, DCF UNSUPPORTED the 51A.
In the PANDAS case, my clients’ daughter was diagnosed with the disease, thought to be connected to strep throat, by Dr. Denis Bouboulis, a well-known PANDAS expert in Connecticut and was responding favorably to his treatment that included antibiotics. My clients took their child to Children’s when she was experiencing stomach pain and was told by Children’s that the hospital did not recognize PANDAS as a legitimate medical disorder. They were advised to immediately stop treatment with Dr. Bouboulis. Children’s terminated the antibiotics regimen and placed the child in Bader 5, its psychiatric unit. (The details of this PANDAS case are worthy of a separate blog, which is forthcoming.) Not surprisingly, the children’s symptoms worsened. The child refused to eat, and exhibited Tourettes Syndrome-like tics. (The child also lost ability to talk or walk and exhibited significant attachment disorder.) Eventually, the child was released from Children’s and the parents once again sought treatment for PANDAS. Children’s filed a 51A expressing “concern” that the parents were seeking unnecessary medical treatment (including a G-Tube, tonsillectomy and plasmapheris) and even accused the child’s mother of Munchausen by Proxy).
DCF initially supported the 51A, which often happens when Children’s Hospital is the reporter. (After all, how is DCF in a position to challenge the expertise and experience of Children’s Hospital when it comes to a complicated medical case?) However, a curious thing happened at the beginning of the 45 day assessment. My clients were fortunate enough to get a good, experienced social worker with whom I was familiar, having had cases with her in the past. Significantly, over the course of several weeks, the child showed significant improvement while on antibiotics, which the social worker was able to see and report to her supervisor.
In light of these developments, I advised the social worker that the parents would NOT participate in the 45 Day Assessment AND, to my clients’ surprise, …she told me that there would be no negative consequences of this and, more importantly, DCF would be UNSUPPORTING the 51A. This was a huge turn around, considering just two weeks prior DCF was threatening to file a Care and Protection if the parents did not agree to treat their child at a rehabilitation facility and engage her in counseling. (The parents had already tried rehab with negative results and the notion of forcing therapy was simply mystifying, given the child was still nonverbal experienced extreme separation anxiety when not at her mother’s side for even a minute, was non-ambulatory, had tics still etc.)
The take away for Parents is this: In controversial medical cases, you absolutely have to be on guard and should NOT assume that the big-named hospitals (especially, it seems, Children’s and MGH) always know best or that they wouldn’t turn on you when you disagree with them; also, if possible, do your own research first!; Seek out others in your situation (for example, there are wonderfully informative on-line sites and web-based communities for many of the more controversial and less understood diagnoses out there, including PANDAS and Mitochondria); Find out who the experts are before taking your child to one of the big hospitals; Understand that you are the parent and have the right (and responsibility) to seek the opinion of more than one expert and cannot be forced to seek treatment at any particular facility; Maintain a log or calendar and detailed notes of the treatment and your dealings with the hospital–that is, document everything!; And, if/when you find yourself the target of an investigation either by the hospital or DCF (or for that matter, the police), quickly line up your support system (doctors and collateral sources) and by all means, get a lawyer! Do not think you are going to get through this alone or that you can’t hire a lawyer because you will “look guilty.” Believe me, they have lawyers reviewing their controversial cases very early on in the process too–sometimes even before they file a 51A, so you should too. In fact, I would go so far as to say you may want to have an attorney on board as soon as you begin battling a Children’s Hospital or an MGH and not after they file a 51A report. It’s certainly not going to hurt you and in all likelihood, if you hire a seasoned attorney with experience handling these complicated medical cases, having a legal advocate will help you.
As always, feel free to email me if you have any questions/concerns at: firstname.lastname@example.org