Dear CDC and Children's Hospital Administrators,
I am a parent with a toddler going through cancer treatment. I am beyond frustrated with the CDC recommendations that have kept a ONE PARENT only policy "for our protection". This isn't only at my local hospital. It's at most, if not all, hospitals around the United States.
If I am being honest, pediatric cancer families are some of the most diligent in avoiding the risk of COVID-19. Our child's life depends on it.
We have been forced into practically isolation because we don't want to risk being responsible for our child catching Coronavirus and having serious complications from COVID-19 from interacting with an asymptomatic person or from inadvertent exposure in a public place. When we request special exceptions to allow the second parent or the siblings to be allowed, most of us get told it is not even an option because they are "following the CDC recommendations" which they have adapted as hard rules. When the hospital should at least have some discretion on a case by case basis.
A children's hospital should be there to make our lives as easy and as safe as possible during some of the hardest times of our families' lives. , but instead, it has made it beyond complicated and left parents angry, disappointed, and tired of having to constantly push for more.
You expect only ONE parent to be allowed with the child on the floor at a time. If we ask for permission to swap out in the room to allow the SECOND parent to have some time supporting our sick child, we are told "Absolutely not. It poses too much risk."
But frankly, it's an illogical response.
Please explain how having the Second allowed parent into the room by swapping in the lobby downstairs poses an additional risk to the same floor?
It is literally ZERO additional risk.
The Second Parent is going to be on the same floor within minutes either way, seeing the same staff and entering the same room. Instead, we are forced to leave our four year old child alone, or with a nurse keeping an eye out, in case our child has any vomiting or needs to use the restroom since he isn't able to do it alone with all the tubes he is attached to.
That child could be "watched" by a nurse as we step out to swap places with the other parent, but without fail, our child may need us to hold a vomit bag and rub their backs and assure them that we are PRESENT. Or what if our child is experiencing extreme pain that needs to be managed or A child who has a dropping heart rate or skyrocketing blood pressure as a response to chemotherapy needs immediate attention? Who takes the nurse's priority?
Is it fair to stretch out the nurses so thinly and cause distress to the child and family for such a silly restriction that pediatric parents agree is ridiculous. These restrictions place a burden on the Hematoly-Oncology nurses when they have several other kids with critical illnesses that demand their frequent attention on the same floor.
Please tell me how having both parents on the floor together still poses additional risk?
In addition, because pediatric cancer families are following the social distancing rules, parents are left with limited support in order to maintain the social distancing even from their village of helpers to lower the risk of exposure. Where once, families were allowed to bring healthy siblings to the clinic or hospital, siblings are now restricted from coming.
Many families with a child in treatment have had one parent already resign from their jobs to take care of their child or to spend the last days with that child. The siblings are now no longer allowed to be present in the clinic or visit the hospital room.
These children, both cancer child and their siblings, are already socially distanced from family and friends to keep the cancer sibling safe. The cancer child finds a tremendous amount of comfort in the presence of their siblings that are able to play with them and console them in a way only children have the ability to do.
And you have placed an extra burden on the homes of those who have one parent needing to work to be able to pay for the mounting treatment bills. You have told those parents that they can't bring in the siblings because it poses a greater risk to all, even though we kissed our family goodbye minutes before on our way out the door. But still, more exposure from those siblings. Right?
Instead you are jeopardizing the lives of all these immunocompromised children by forcing the family to seek help outside the home when it brings a risk of an additional layer of exposure, not only for the cancer family, but for the families entering the home of someone who is in a hospital weekly for treatment.
You are creating needles barriers to the families fighting to keep their child alive, not only physically, but in spirit as well. Families who are trying to maintain some balance within the family unit when there has been complete upheaval by pediatric cancer already.
I am furious that these recommendations have not taken children with critical illnesses and their families into account. Instead of giving hospitals some flexibility, you instead set guidelines that are excessive and illogical for pediatric cancer families.
These families deserve better. Do better.
Please share to raise awareness and help us push for better hospital policies for families like ours! "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." - Dr. Suess