My daughter Lala (12) has a rare disease that requires her to get regular (chemotherapy-like) infusions at UCSF. These infusions take between 5-7 hours and are necessary to keep her health stable. However, the pediatric infusion area at UCSF (Mission Bay) is not practicing social distancing (I have been told there are times when each chair may be full - putting patients within close proximity to one another) and creating a number of risks, which are detailed below. Requests to secure a private room have resulted in a “that may not be possible”.
My daughter is getting sicker - and I have delayed her treatment longer than is wise or medically advised trying to advocate for changes in infusion center practice. The irony is our greatest risk of catching Covid-19 is getting treatment for Lala’s underlying health condition. We have been in total isolation for 40-days.
And though all other communal spaces are closed and social distancing is mandated throughout the medical center and hospital- the public infusion bay is still open with chairs placed in some cases less than six feet apart for treatments that run up to 7 hours separated by “privacy curtains”. There is an intention to not fill the infusion bay, but there are no guarantees offered to patients that the PIC won't be completely full.
Not all of the high contact surfaces are cleaned between patients -bathrooms, doors, faucets, outlets, visitor chairs, etc. I have been told if it will make me more comfortable I can disinfect the surfaces used by other patients that my daughter comes into contact with.
Now let’s talk about PPE or the lack of meaningful versions of it. There are no aprons, visors, N-95s, etc for the nurses who move from patient to patient because it assumed by the medical center that everyone is COVID negative on the unit. Something we are asked to not assume in other public spaces.
In the past, during visits to the same infusion center, when I have had a suspected cold or virus or a staff member has had the same- everyone has practiced droplet isolation. I have been covered head to toe in Tyvek/masks/gloves/etc. and the nurses gown up, wear PPE (masks, glasses, etc), and change each time they come into contact with my daughter and before working with another patient. I am perplexed why that is not happening now in a moment in history where it is prudent to assume we are all potentially infected with COVID-19. Nurses are not wearing n-95s unless patients are symptomatic - of which none are in the infusion center. And while patients and providers are wearing face coverings; the science behind non-N95 masks preventing viral transmission is not well established. I wonder why UCSF is not erring on the side of health and protection of its most vulnerable patients?
My concerns have been met with regular responses from the medical center that no one with symptoms is allowed in the infusion center and that children are not getting infected with Covid-19. Unfortunately, new studies show that our children may not be as protected as we had thought. A study just published in the Journal of Public Health Management and Practice looked at data between March 18-April 6. During that time, 74 children were admitted to the PICU for COVID-19 across 19 states - 30% were children < 2 years, 24% 2-11 years, and 46% 12-17 years. Based on epidemiologic calculations, the researchers estimated that for each child who requires intensive care for COVID-19, there are 2,381 children infected with SARS-CoV-2, which means that approximately 176,190 children were infected with the virus during that 3-week period. The Chinese CDC has also published recent studies showing higher rates than originally thought among children. And recent research conducted by Stanford and other medical centers indicate that far more people are asymptomatic carriers than originally thought.
I, like many other parents of children with rare diseases right now, am having to choose between depriving my daughter of a critical treatment, or putting both of my medically fragile kids at risk from the virus. There are some relatively simple changes that could make a huge difference in risk factors for Lala and other kids. This is not an abstraction - my sister was infected with COVID-19 during a recent infusion at a well respected research hospital in NYC.
I am asking for the following changes:
1. All families seeking infusions be offered the use of a private room with its own bathroom; or a private room with the use of a bathroom that is professionally disinfected between each use (only in the case of emergencies should public infusions areas be used while maintain strict social distancing);
2. All families/staff be offered the option to use PPE and the protocols offered for droplet isolation in the infusion center;
3. All families seeking infusions be offered a "cold" or entrance/elevator separate from the areas screening people with suspected respiratory infections;
4. All families be offered a "side" of the garage that designated for immunosuppressed kids (so designated elevator) and protective equipment (facial covering) prior to entering the elevator.
Home infusion is not an option because of insurance. We cannot be assured of a private room in the infusion center. We cannot be assured that the public bay won't be at capacity. There are good intentions but few commitments. I know that there are empty hospital rooms, open because of canceled non-essential and elective procedures, that could be used to infuse in privacy & safety. Rooms that would offer more protection for patients and staff.
As of yesterday following a conversation with the infusion center charge nurse (who is amazing and does not make policy), my choice is risking the public infusion bay (there is no way to tell if it will be crowded or not) or letting Lala’s health take a dangerous turn. I worry as the only adult (an asthmatic one) in our household of medically fragile former foster children, what will happen to the girls (also asthmatic) if I get sick? What if they get infected? How I can quarantine Lala and I apart from my other 13 year old daughter when we get home from the medical center in a way that is humane and feasible while caring for the health needs of both kids?
Sure I will do all the decontamination protocols and do my best to keep us safe - I just believe that the medical center can and should do better in protecting its most vulnerable patients and their families. I am asking for things that prior to COVID-19 were available in the PIC to patients with concerns about viral infection.
I have faced many challenges as the mother of medically fragile children, I have had to make many hard decisions regarding their care, but never before have I knowingly put them in the path of avoidable harm. Please help me by doing what you can to insist that the pediatric infusion center make every effort, even the inconvenient ones, to reduce the risk to vulnerable children during the COVID-19 pandemic.
I am mermaid and rebel - a mama to two - I believe in art, music and magic and the rest I cover up with glitter and tattoos.