Editor’s Note: The Vaccine Education Center at Children’s Hospital of Philadelphia would like to thank this month’s contributors. To protect the privacy of the children and family involved in the story that follows, we are not providing the name or other identifying details of the stepparent sharing their story. We would also like to thank Dorit Rubenstein Reiss, Professor of Law at UC Hastings, for her assistance related to the legal aspects surrounding this case.

I am a cardiothoracic anesthesiologist who met my husband prior to the COVID-19 pandemic. He had already been in a long and painful divorce that took many years and involved many challenges. When his children were infants, my husband and his previous wife decided to stop vaccinating the children due to his wife’s concerns about vaccine safety. My husband wasn’t sure about doing this, but at the time, he supported his wife.

Then COVID-19 came.

As an anesthesiologist intubating COVID-19 patients at their sickest, I always worried about getting infected and spreading the virus to my family. My husband shared the same sentiment. It was at this point that he started to have real regrets about not having his children caught up on their childhood vaccines. We knew eventually a COVID-19 vaccine would be available, so my husband decided it was necessary to involve the courts in getting his children vaccinated. What follows are some takeaways that I, as a provider and a stepparent, witnessed. I hope by sharing our experience, we can help providers and other families dealing with similar situations.

Takeaway #1: Pursuing legal rights to vaccinate is complex, costly and time consuming.

One thing I would like to emphasize to healthcare providers is to appreciate how much work it takes for a parent to pursue legal rights for vaccination.

Opting to file a petition for medical decision-making is a big commitment. In this case, dad petitioned for final say related to all medical decisions but asked that if the court felt inclined not to grant overall medical decision-making, they at least consider decision-making authority for vaccines. This is a good option to offer the court as a back-up if sole medical decision-making is a tougher choice for the judge to make. To be successful, a petitioner requesting final say over any type of medical decision-making must present credible reasons for the request. Related to vaccines in this case, that included providing substantial data and statistical evidence about vaccines and their safety as well as responding to mom’s “data” about vaccines. Parents who are conflicted have concerns about vaccine ingredients, frequency, the effects of multiple vaccinations at once, what VAERS data demonstrate, and more. Often these concerns are presented with “supporting evidence” that is inaccurate and unscientific.

Even in non-contentious situations, providers can help decrease the amount of misinformation parents find by having handouts and other resources readily available during well visits and being prepared to provide additional reputable sources for information to parents who are seeking it. Often, simply having a list of credible resources, and indicating that these sources have been vetted by the provider’s team, can help parents feel supported in their quest for more information and keep them from being misled by the vast array of inaccurate sources on the internet. Further, in situations such as this case, those vetted sources of information can be critical to the parent, and their legal team, as they seek to build a case based on scientific information and facts. Many parents, and even family law lawyers, do not know where to start when it comes to getting information that explains the science of vaccines and supporting scientific references. However, providing this information is critical, since judges are not trained in medicine, and — as with other complex areas — they depend on the parties to inform them. The parent who does not want vaccines will bring in the claims that made them reject vaccines, so the other parent needs to help the judge see why those claims are untrue.

Usually, these types of cases involve multiple matters in addition to the request to oversee vaccine-related decision-making, such as custody and child support. The process itself is extremely costly and time consuming. Because court systems are often backlogged, it can take three to six months between filing a petition and having a hearing. After the hearing, it often takes another 60 days for the ruling. During this time, the entire family experiences stress beyond that caused day to day as they wait for the court’s decision.

In this case, dad was granted full medical decision-making rights, but had shared decision-making over religious and educational situations and retained split physical custody.

Takeaway #2: Medical decision-making may require “good-faith consultation” with the other parent and may not exclude the other parent from making or attending healthcare appointments.

My husband had no ability to stop mom from attending appointments and participating in the healthcare of the children. He may have had the right to decide what happens medically, but by law, each parent has to inform the other about medical appointments involving the children unless otherwise stated by the court.

Clauses like this one related to medical decision-making are important for healthcare providers to understand. Although dad had final authority on medical decisions for the children, he had to consult mom “in good faith” prior to making those decisions. This is not an uncommon requirement when custody is shared. However, it can create quite a problem when the time comes to actually make a decision. Every action the custodial parent takes requires consultation with the other.

A court-appointed therapeutic interventionalist may be assigned to help arbitrate co-parenting differences and oversee co-parenting sessions, during which the parent with decision-making authority must listen to and discuss any concerns the other parent has. Likewise, the non-deciding parent may want to express their concerns to the doctor directly. In this case, the pediatrician had to consult with both parents several times, and during the process, the mother filed a motion to reconsider the court’s decision, further delaying vaccinations for the children by several months.

Even once vaccinations were started, mom continued to put forth concerns or objections, including:

  • Numerous additional appointments and requests for (unnecessary) medical testing to evaluate the children for potential vaccine side effects
  • Presentation of a medical exemption letter from another doctor (one who practiced in another state and was not board-certified in either pediatrics or family medicine)
  • A request for the doctor to sign a “consent of liability” for the risks involved with vaccination (in the form of a concerned citizen vaccine letter)

Ultimately, the pediatrician, who had cared for the children since birth, discharged the family, citing that the parents were unable to follow office policy and agree on treatment for the children. The pediatrician felt they couldn’t provide the minimum standard of care and were, therefore, forced to leave the children at risk.

As a physician, I wholeheartedly supported the pediatrician’s decision. As a stepparent though, I was very concerned for the children. I knew they would carry this discharge notice on their permanent medical record, and I was filled with fear wondering what pediatrician would accept them after this. I was also concerned for my husband — what would happen legally if he had to sign a new patient vaccine policy consent form and how would he be judged for bringing his children to a new provider with this anti-vaccine history as part of the record?

Takeaway #3: The situation may necessitate separating provision of vaccination services from other healthcare services.

Watching global vaccine rates drop as a result of the pandemic, we were very worried that any new pediatrician would have an even lower threshold for discharging the children should additional controversies arise over vaccination.

In this case, the parent with decision-making authority took several steps to try to prevent another situation that would result in the children being dismissed from the new practice, including:

  • Petitioning the court to exclude mom from all vaccination appointments.
  • Finding a pediatrician that didn’t require new patient consent forms for vaccines.
  • Deciding to take the children to the local public health department for immunizations. This was particularly helpful because it prevented the need for the pediatrician to arbitrate with mom, and as a governmental agency, the laws related to vaccinations emanated from their office.

Ultimately, the court decided that mom could be excluded from future vaccine appointments, and dad continues to maintain complete authority when it comes to medical decision-making.

Takeaway #4: Children involved in these situations need to be protected and provided with additional support.

Truly though, the children are the ones that suffer due to parental conflict over vaccines or other issues.

Children in these situations need to be protected from the emotional trauma that comes with watching parents argue about different values and beliefs. As such, the children should not be present during vaccine consultations with the pediatrician. If the doctor is anxious and feels the need to take sides in this type of situation, imagine what it must be like for the affected children? The children in this case have faced confusion and fear related to vaccines. These feelings manifested in different ways at various times. For example, one of the children ran out of the room when the nurse entered with the vaccines. Another time, the child displayed side effects that the mom was concerned about while with mom, but the effect went away when the child returned to dad’s house.

Throughout this experience, dad and stepmom tried to support the children in a variety of ways, including:

  • Reading age-appropriate books about vaccines together
  • Watching other children in the family be vaccinated
  • Accompanying dad as well as the family puppy when they were vaccinated
  • Seeing a counselor who helped them learn ways to deal with living in two households that have different philosophies.

All of that helped, but it doesn’t completely heal them from what has happened and what may happen with future vaccines.

In conclusion

As a physician myself, I can’t imagine how defeating it must feel when parents choose not to vaccinate. During the delta variant, every time I helped place a postpartum patient on ECMO, I experienced feelings of frustration as I watched these young, unvaccinated mothers near death from COVID-19. When I would walk into the ICU to assist with emergent placement of ECMO, I would always see family photos plastered in the patient’s ICU room. Photos of their children, babies and families; cards; and other get well wishes would be all over the room, and all I could think was, “Why? Why would someone let themselves die over not wanting a vaccine?”

After seeing this time and again, I reminded myself that the majority of people are not physicians. They did not spend 80 hours a week studying every aspect of medicine for four years. They did not spend another three to seven years in residency, where more 80-hour weeks were spent attending weekly lectures and journal clubs and reviewing research. Most of society hasn’t studied the history of infectious diseases or concepts like viral mutation, antigenic shift and drift, antibiotic resistance and vaccine development. In medical school we are taught about what our forefathers in medicine endured treating diseases like smallpox, bubonic plaque, polio, meningitis, measles, mumps and rubella. Yet, society doesn’t remember these times — indeed, many young parents of today were not even alive at the time. As a physician, I think it’s important that we remember this context and the reasons for this perspective as we interact with this younger generation.

So, I say, thank you to all frontline practitioners fighting to protect the wellness and health of our children today. It’s what you do that keeps our children protected, safe and out of the hospital — even when that job is made more difficult by parents resistant to vaccines.


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