The Mito411 Plan of Action
MitoAction’s Mito411 support line has supported numerous families through allegations of Munchausen Syndrome by Proxy, or in recent years, the newer and broader concept of Medical Child Abuse.
Generally speaking, parents facing false allegations of medical child abuse need a plan of action. In the midst of heart-wrenching accusations and separation from their child or children, parents – especially mothers – need something tangible to do to ease the likely intolerable situation that was often unknowingly thrown upon them.
Here is Mito 411’s four-step plan for responding to false MSBP or MCA allegations:
(1) Get a Lawyer: Finding a lawyer who knows his or her way around a Child Protection case is key. Such lawyers may practice “child welfare” law or might focus on “parent representation” in child protective services cases. This is very different from specializing in “family law,” which typically has to do with divorce and custody situations.
Most states have laws providing for lawyers to be appointed if the family cannot afford legal counsel. Parents under this type of stress may not think clearly and may not understand all the proceedings. The lawyer ideally should attend all appointments with child protective services and review any documents requiring a signature.
(2) Gather your supports: Family supports include just about anyone who can verify that the parents are good parents, care for their child properly, and offer them a “normal” childhood. These supports include clergy members, neighbors, teachers, home health aides, home RNs, community doctors, office staff, PT, OT, and so forth. One family’s strongest letter was from the service dog trainer who had been working intensively with the family for a full week at the time of accusation.
A written letter stating just how well the family cares for their child has been helpful on more than one occasion. It also can give the parents much-needed confidence when their parenting skills and choices have been called into question. It is best to do so early on, for once the process gets rolling, many health professionals are forbidden to offer such support even when they openly and fully support the family. Institutional providers, such as hospitals, home nursing services, and so forth, refuse to allow employees to write or even speak in support of a family after legal documents have been filed.
In addition to gathering supports from multiple aspects of family life, be sure to ask for a team meeting early in the process to see if everyone can reach a common ground, clear up any misconceptions and simply begin the process of honest communication. If an attorney has been retained, it is important to have the attorney attend any team meetings to represent the family’s interests.
(3) Gather Medical Documentation — Past and Current: Be sure to get copies of all medical records documenting test results, diagnoses, and procedures, complete with dates and names. For example, if necessity of a G-tube is called into question, obtain the procedure notes, the test results, or physician notes as to why the G-tube was ordered. Include growth charts, RN notes, school notes, and so on, that support that decision. You should do this for as many diagnoses and/or treatments as possible. Who ordered this medication and why? Who told you your child had Mito and which test results or clinical data supported the diagnosis?
This job can be cumbersome, but parents are entitled to this information, at least while they still have custody. This step is far more seamless when the parent follows the preventive measures of keeping a notebook of records written by the doctors themselves, or obtains copies of the discharge summary from each hospitalization and doctor’s notes from each office visit. Such documentation should include all communication from the time the medical problem occurs, including a log of the medical providers spoken to by the parent, what topic is covered, the date, time, and so forth. This information helps in court when a parent or lawyer may be asked to recall the events of a specific day. In the absence of such documentation, Child Protective Services will seem well-informed (because they have access to the chart) while the parents will struggle to remember what happened that day. When a parent can state, “Oh, yes, we met with the doctor on November 25 and discussed feeding options for our son,” the parent now is empowered, in control, and becomes less of a victim. All forms of contact with medical personnel, including phone calls, appointments, emails or letters received should be documented. Some suggest a spiral notebook so that pages cannot be easily added, but it may not make as much of a difference in this day of technology.
(4) Watch your attitude in every arena — “Play Nice!!” While this step makes sense and sounds easy, it is never easy. The parents’ world has been turned upside down and they often feel like they have lost everything. Parents question the foundation of their parenting and are furious that this could have ever happened. Many feel blindsided, isolated, scared, embarrassed, and a million other emotions all at once. A natural reaction to such strong reactions is to yell in an attempt to be heard.
Parents falsely accused of Medical Child Abuse know that their child needs them and is scared. They also know deep down that they are good parents, no matter what the system might be saying. Some parents end up doing anything to get the child back or to see the child, including agreeing to charges that they do not understand. Other parents tend to lash out and become “aggressive,” “hostile,” and “difficult,” and may have had tougher or more demanding personalities to begin with.
Playing nice, therefore, is not easy, but it is vital to the communication process. Of course, the medical professionals and Child Protective Services agents of each state need to keep communication as welcoming and civil as possible, holding themselves to the highest of standards. Keep in mind, however, that Child Protective Services has no obligation of confidentiality, so anything said during the course of an investigation is fair game for use in a future court proceeding.
Medical Child Abuse allegations in Mito families generally seem to be the result of a perfect storm, with many visible red flags seemingly unseen by the families. Not only do families need to be warned about these flags, but medical professionals need better tools to differentiate between a true red flag for abuse and a typical family trying to figure out what “normal” really looks like for a medically fragile child.
There is, of course, an enormous value in preventing allegations of Medical Child Abuse before a point is ever reached that would cause removal of a child from the home. To avoid crisis mode for the sake of the whole family, it is vitally important for caregivers to recognize the red flags that may lead to accusations. These red flags are discussed in detail in the Mito Navigator Toolkit.
It is common knowledge that mothers are the ones accused of Munchausen’s by Proxy and Medical Child Abuse nearly all of the time. Fathers are drawn in if they believe that the accused mom is, in fact, a good parent, or if they have allowed the mother to make medical decisions without stepping in. It is clear that fathers don’t win, either. One accused father shared that he would have been awarded custody of his girls only if he signed a court document stating that his wife was purposely harming the children. His alternative “choice” was to also be accused of Medical Child Abuse and have the girls go to foster care. In the end, he just could not say that his wife was a bad mother when she had given up everything for the girls.
Very rarely, some parents may lose sight of where their child may fall in the health-illness continuum. Fatigue and genuine fear are all a part of the picture, and simple (but time-consuming) education could prevent much conflict and misunderstanding. Medical personnel have more pressure and less time these days, but they still have an obligation to listen, educate, and do no harm. Moreover, the medical world is still learning about all the nuances of Mito, and although parents know their child better than anyone, they too need to trust the child’s medical team in changing treatment approaches even if those same steps did not work six months ago.
Social Media and Publicity
As for social media, families need to be very careful of what is posted on Facebook, Twitter, blogs, Instagram, etc. Parents use social media as the new backyard chat with friends, but this form of communication is anything but a private conversation between friends. Yes, parents love the support they feel from the Facebook Mito groups or the hints that they may get from the G-Tube forum, but they need to be extremely careful and mindful of each post. Such information should be taken down immediately if Medical Child Abuse allegations are raised, especially blogs that focus primarily on the child’s medical journey without balancing segments on the wonderful things that child is also doing.
Some families maintain Facebook pages in a child’s name that are only updated (with pictures) when the child is in the hospital or undergoing testing. While it is understandable that a parent would post when stressed, such blogs do give a very lopsided view of the child’s life. The point is to avoid painting the picture that the child’s life centers only around sickness, procedures, and doctors, for the concern in Medical Child Abuse/Munchausen’s Syndrome by Proxy cases is that the parent perpetuates the cycle of illness so as to receive sympathy and secondary gain from having a chronically ill child.
The above recommendations may seem a bit paradoxical because Mito kids are chronically sick and there is not much a parent can do to stop the progression of a progressive disease. Experience has shown, however, that parents who are not mindful about the social media balance are at high risk for allegations of Medical Child Abuse. Instead, it is important for parents to find a trusted friend and seek support face to face rather than via social media.
MitoAction also has found that fighting Medical Child Abuse allegations in the media has not worked out well for the families, likely because everyone digs their heels in and will not budge an inch for fear of being viewed as guilty in a public forum. Attempts to “go public” with a Medical Child Abuse situation tends to lead to longer separation of children from parents and difficulty with obtaining medical care for the child after reunification. Negative comments about physicians and hospitals on social media also are extremely unhelpful. The best advice MitoAction can give regarding social media is to be mindful of everything that is stated, posted, and written about your family.
It may sound like this Plan of Action would restrict parents’ abilities to speak up on behalf of their child in the event of a medical crisis. Restriction of such communication is not at all the intent. Rather, the intent is to protect the child or Mito patient above all. Ultimately, children belong with their families and solid communication and education of both medical professionals and parents can keep families safely together.
There is no denying that parental instincts are vital and incredibly valuable. Parents spend many, many hours each day with the child, understanding that child in a way that no one else could after a couple of office visits or a few days in the hospital. Adult patients also uniquely know their bodies. This experience-based knowledge needs to be respected as it can offer unique and accurate insights with regards to ongoing care. However, the frequency of Medical Child Abuse allegations in the mitochondrial disease community makes rational advocacy skills and thorough documentation of medical decisions even more important, for some physicians are not as willing to simply listen to the patient and trust the multi-system presentation of mitochondrial disorders.
As part of advocating effectively within the medical system, it is important to understand your rights as a patient or caregiver. Hospitals generally have patient bills of rights, which typically state that parents and patients have the right to seek the best possible care for their children and/or themselves. Parents do need to effectively advocate and communicate on behalf of their children. Most importantly, parents and patients, when faced with a critical medical situation, do need to put the best interests of their child first and speak up, even if doing so might risk a conflict with medical staff.
If your family ever is targeted with false allegations of Medical Child Abuse, do keep this in mind: it might be worth advocating strongly on behalf of a child who truly is declining in health. There may be a time and place for trusting parental instincts and using every available avenue to get the care your child needs, even if it may mean risking custody of your child.
MitoAction’s Mito411 Support Line Is Here For You!
Mitochondrial disease is not an easy journey, and Mito families are disproportionately affected by Medical Child Abuse allegations. If you feel as though you need further support in responding to allegations of Medical Child Abuse, please reach out to MitoAction’s Mito411 line. While our volunteers cannot provide legal or medical advice, they are more than willing to listen and share suggestions during a stressful and difficult time. Please know that MitoAction is here to support you and your family should such false allegations ever be brought against you — you are not alone!