The California Department of Public Health has reached a conclusion of their investigation into Rowan’s death. In their verbal report, they state that the hospital’s policies for anesthesia and the physical environment met all current state standards and they find no regulatory deficiencies. Rowan’s case at the California Department of Public Health is now closed.
In interviews with doctors, the CDPH investigated:

  1. FAILURE TO PLACE AN IV LINE PRIOR TO ANESTHESIA FOR ROWAN. The hospital claims that Rowan was so much at risk from cardiac arrest they didn’t put in an IV line as the “agitation” and crying could kill him. (see “Rowan is uncooperative”)
  2. PLACING ROWAN UNDER GENERAL ANESTHESIA FOR A DIAGNOSTIC EXAM. The hospital claims that Rowan was more than healthy enough, in fact was cleared following a superficial cardiac examination, to follow the general anesthesia guidelines for the general population.

So, Rowan’s physicians and the hospital are saying he was healthy enough for general anesthesia (clearly shown by multiple studies to carry high risk of sudden death for children like Rowan), but not healthy enough to put in the IV line (or any other pre-anesthetic monitoring) that could have saved his life.

As a comparison, it would be negligent to perform general anesthetic induction on an adult with even one significant risk factor for congestive heart disease without placing an IV line prior to induction to maintain hemodynamic balance and allow rapid drug intervention in case of emergencies.

Current recommendations for general anesthesia in children with WS like Rowan highlight the critical importance of maintaining adequate hydration and blood-fluid balance during anesthetic induction. This is almost always done using IV fluids via the placement of an IV line. An IV line also allows for rapid life saving drug administration in the case of sudden cardiac arrest. We know of at least one other child with WS who died under anesthesia, and the hospital claimed that dehydration was the cause. As anesthetic induction is now considered high risk for children with WS, the physical presence of life saving equipment (an example is called ECMO, that takes over the function of the heart) in the room where anesthesia is administered is also highly recommended. None of these recommendations were followed for Rowan, were in fact deliberately ignored, yet all of this is well within acceptable policies and regulations.

The glaring contradiction that Rowan was 1. Too unhealthy and easily agitated for pre-anesthetic monitoring or precautions and 2. Healthy enough for no precautions at anesthetic induction was fully accepted by the CDPH investigating physician as being compliant with acceptable procedures and policies. When we asked the CDPH representative to explain this contradiction, he could not. He could only say, “The CDPH is not responsible for overseeing the doctors’ decisions”.

That the CDPH accepts this clearly bizarre and insulting contradiction and has closed their investigation with no findings against the hospital is insulting, and demonstrates just how systemic the institutionalized suppression of medical malpractice has become. The CDPH justification is that the hospital’s policies on anesthesia (again – it is only institutional policy that CDPH investigates) need to be broad as they have to cover a broad range of patient needs. This justification is an exact representation of the systematic failure and “treating to the average” that lead directly to Rowan’s death.

It is completely unacceptable that Rowan was not seen as an individual with specific medical requirements, despite our loud and repeated concerns. If anyone is in doubt that individuals with special needs are the forgotten minority, this should be a wake-up call. The acceptable policies are boilerplate, sub-standard and no regulatory mechanism exists for the protection of children like Rowan, who are rare, differ from the norm and are uniquely at risk within our medical system.

(Please note the CDPH does not investigate medical errors or malpractice as performed by individual doctors etc.. That is investigated by the California Medical Board, who we have petitioned. To this date, nearly one year after Rowan’s death, we have received no response form the California Medical Board).

UPDATE:   The above is based on a verbal conversation.  When we received a written  letter a month later, it stated ““a common practice in pediatrics to not insert an IV line prior to anesthesia induction