If You Have Ever Wondered Why There Are Children Alone in Their Hospital Rooms

The painful side of being a working parent is having a child in the hospital.

It’s on almost everyone’s mind lately, what will the new healthcare plan look like? Will I lose coverage? Will preexisting conditions be covered? And for those of us who have children with special healthcare needs, will my child still get coverage? Will he or she get the treatment they need? What’s going to happen?

I’m writing this as I’m walking down the hallway at Rady Childrens Hospital on my way to work. My daughter is still admitted on the general medicine floor. Thankfully, Daddy is there to provide comfort and keep her safe.

As I walk down the hall, I can’t help but noticed all the children who are alone in their hospital rooms and obviously have complex medical needs. It’s so easy to judge — maybe the initial thoughts are their parents don’t care, or how sad it is they’re alone. And then it dawns on me. These children are probably here a lot, just as my daughter is.

The first admission of 2017 came just a few short weeks into the year. On just the first hospital stay of the year, I had already run short of sick hours and PTO. I am grateful to work for an amazing company who recognizes our unique circumstance and makes arrangements for me to take additional time off work to be with my daughter. Happy to be doing better, she was discharged, only to require readmission just a few short weeks later. My heart sinks — how is this going to work?

We live 60 miles from the children’s hospital. I have an amazing and loving husband at home who is supportive beyond words. But the reality is, my daughter is a twin, and the healthy twin is at home over an hour away. My PTO at work is already run dry from the last admission. I’m stuck in an emotional struggle where I cannot bear to leave my daughter, but at the same time I cannot afford to miss work. My job is our lifeline and it’s not only financial. Without it, we do not have the adequate healthcare coverage we need for our daughter. Sure, the easy answer seems to be to change our lifestyle and be a stay-at-home mom. And while my husband has an amazing developing career, the benefits offered by his company are not only unaffordable, but are inadequate for our family’s needs. And now with potential changes to healthcare policies in the near future, I am fearful that if I leave this job, my daughter will be left without healthcare coverage due to her “preexisting condition.” So I choose to arrange for a neighbor to watch our twin at home while my husband drives to the hospital to stay with our ill daughter.

 

I become teary eyed as I leave the unit and my daughter cries for mommy. I know my daughter is in good hands, but I will be attending work while she is in the hospital, and it just feels wrong. And then it dawns of me how lucky we are to have the support we have. At least we are able to alternate our shifts so we can arrange for Daddy to be at the hospital while I’m at work. My mom will be flying in tomorrow to offer some very welcome relief and help with the kids. Our neighbors have gone above and beyond to help. Sadly, not all these families have this support.

The day moves slow and I cannot wait until my shift ends so I can hustle back to my daughter. As I return to the hospital after work, I see dozens of other parents also flooding the hospital unit. Many of us exchange quick glances and warm smiles. As time goes on, the parents who have been there for long admissions begin to recognize one another. We share brief updates on our children as we wait patiently for the secretary to buzz the door open for us. There are many warm embraces between parent and child, and reports of the happenings of the day from the loving nurses who helped nurture our children while we had to be away. And then a happy recognition comes to me: we are all great parents. We may feel sad or inadequate for leaving a chronic child in the hospital while we go to work. But we are warriors doing what we have to do to keep our family afloat. It’s sad that it has to be this way, but we are strong and we will make it through this admission just as we always have in the past.

To all those resilient moms and dads out there, I commend you for doing what you need to do to keep your family running while still managing to put your children first.

So I urge the political powers that be — please consider us when you determine the fate of our healthcare system. We’re not looking for a “handout.” We are simply looking for help meeting our family’s unique healthcare needs while also being able to be a parent. No parent should have to endure the torture of leaving their child alone in a hospital while they go to work. Unfortunately, many of the proposed plans involve severe cuts to children’s medical services. Many of us simply cannot stay afloat without these services. So I urge you, whether you are a parent of a disabled child, know someone who has a disabled child, or just want to advocate for children’s medical rights, please write to your local politicians. Help them to see this hidden side of healthcare policy.

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