The Cost Of It All

Financial cost is a topic that I frequently see discussed on medical ethics blogs and rarely discussed on the preemie parent blogs. Although, it is a regular topic of conversation on the closed preemie boards. An exception to this generalization is the Love That Max post titled How Much Do Therapies Cost For Your Child With Special Needs.

I can tell you from our experience it is expensive to have a preemie and/or a special needs child. Even though our household has a respectable income and we have “good” insurance coverage for Charlie, our budget is tight.

Where do these expenses come from? Therapist co pays (if covered at all), specialist co pays, re hospitalizations, diagnostic test co pays, lab co pays,  special formula (not covered by insurance), orthotic co pays, medicines with $50 co pays, dietitian (not covered by insurance), and other special equipment (such as therapeutic equipment). That is in addition to all regular expenses involved with raising a child.

Charlie is priceless to me and I would take on even more cost if I had to for her. So, like other preemie moms, I learned to fight automatic denials,  have become an expert in Charlie’s insurance coverage, and am sure to document everything. My husband and I make our clothes last longer, go without vacations or date nights (we haven’t been out on our own together since Charlie has been home from the NICU), and shop at outlet stores. Also, I am learning about health programs that are available as she grows older.

As lousy as it is to be forced to fight for the coverage we pay for or have to pay completely out of pocket for things, I consider us lucky. I have met many preemie moms that have lost their homes or been forced to declare bankruptcy. I have even met a parent that had to take their child overseas to receive affordable treatment.

I am not sure what the answer is but our health care system is broken. Even though we did everything we were “supposed” to do, I feel like the system failed us. We are not alone. The majority of people in this country are one medical catastrophe away from financial ruin. I want to know how this is a good thing for our country.

It is time there is pragmatic talk about agreeable solutions. Even with insurance, the American dream frequently dies with the birth of a micro preemie.



About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

4 responses to “The Cost Of It All

  • A Miracle In the Works

    Agree. The financial impact of having even a 33 weeker has been devastating. We’ve had to cut out and back on everything. I wish we hadn’t bought the house we did or made some other financial decision that we did prior to our little one’s arrival. We struggle and we keep moving forward. We do what we do to help her grow and develop at any cost!

    I’m glad to know we aren’t the only ones.


    • Becca

      You are not the only one. For some reason, I rarely see it discussed in the open. I want other preemie parents to know that they are not alone. I want people without preemie experience to realize that having a preemie is devastating on multiple levels.


  • Astrid

    I and my family have been fortunate. In the Netherlands hospitalizatioon and such are paid for by mandatory health insurance. I was myself born a preemie in the 1980s when health costs weren’t yet the hot topic they are now. Now at least twice a year the basic coverage (what is mandated by something similar to Obamacare) is cut. I’m still relatively lucky but I understand people and parents who can’t afford certain treatments. I also must say unfortunately the quality of life discussions often go hand-in-hand iwht cost discussions, as if it’s somehow better for the family to have treatments not covered or babies not allowed to live.


    • Becca

      Thank you for your thoughtful comment. I suppose that is why the topic is rarely discuss on preemie blogs. Because the question of “Is it worth saving these babies?” would eventually be asked. I find the question as offensive as someone asking, “Should we treat cancer patients (with treatable cancer) when there is the risk they may die, be disabled, or be disfigured from treatment?”


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