My kid has spina bifida. The AHCA is a nightmare bill for kids like her, and pro-lifers should be calling their Senators in droves.

I decided, in light of the AHCA, to research the average cost of health care for people with spina bifida. They call them “million dollar babies” for a reason. The first year, according to an article I found on PubMed, is $41,000. Every year after that is around $14,000. (The first year is the most expensive, usually, because of neurosurgery and NICU stays. I’d bet we racked up more than $41,000 in our first month of life.)
In Arkansas, we had private insurance, as well as Medicaid TEFRA, for which we paid an income-based premium and which we qualified for on the basis of Claire’s disability. It covered 100% of what our insurance didn’t. And there’s a lot that insurance doesn’t cover, but that is necessary to help kids with SB be as independent as possible, like therapies and developmental preschool. In Colorado, a supposedly more progressive state, we still have private insurance, but no Medicaid. We end up paying more out of pocket for our daughter’s care, even though we are privileged to have excellent insurance because my husband works for the university hospital.
I remember when I testified before a committee about Arkansas’ proposed 20 week abortion ban. I talked about how 20 weeks is right around the time that people usually get a fetal diagnosis that changes their very wanted pregnancy into a nightmare. One thing that people are wondering when they get that diagnosis is, can we afford to provide this child with the care she will need for the rest of her life? Will this bankrupt us? It’s a very real consideration. And I have read that 60% of people who receive a fetal diagnosis of spina bifida choose termination.
I’m pro-choice. I support safe, legal abortion care for any reason. However, I also truly believe that there are ways we can help people keep these WANTED pregnancies instead of terminating. And one of those ways is helping them afford the care their disabled kids will need for their entire lives.
The AHCA comes from the supposedly pro-life party. And yet this is a deadly bill for people with disabilities, many of whom depend on Medicaid for their life-sustaining care. This bill will make the answer to “Can we provide this child with the care she will need?” a “no.” I am confident it won’t help, and will in fact increase, that 60% termination statistic.
It also creates new worries for us as parents of a kid with spina bifida. Will she stand to have her coverage capped at some point? Will our insurer say, welp, you’re at the limit, we won’t pay any more for you, and kick her off? Will she be able to get a new policy with her pre-existing disability? Will she be able to work as an adult, or will she have to stay unemployed, lest she get too “rich” for her meager benefits? Will my husband have to stay in his job forever to ensure we keep the insurance we have now, because she might not be covered if we have to switch providers?
If you haven’t already called your senators about the AHCA, please do so. It’s a needless “screw you” to Obama that will cause pretty much everyone to pay more for less coverage, and will literally lead to people dying and pregnancies being terminated. Repealing the ACA and replacing it with this cruel bill helps no one but rich folks who will be getting a tax cut. Please call your Senators and oppose this bill. Today.
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I wish the SBA would shut up about folic acid

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One of the most important things I want to instill in Claire is a confidence that she is healthy and whole, just as she is. Spina Bifida, while not something we chose, has been part of her life from the beginning, and will always be part of her life. We can’t change the past, but we can focus on the present and the future, which are both bright, full of joy and discoveries and yes, also challenges and pain– just like everyone else’s life, too, with or without SB.

What frustrates me is, it seems the Spina Bifida Association doesn’t always share this mindset. I follow them on social media, and I regularly see these kinds of posts pop up in my feeds:  Continue reading

A Claire Update

Having just spent my morning getting myself and the girls ready to go to Spina Bifida Clinic, three hours and change trapped with two two-year-olds in one exam room, and having gotten them home without car napping and successfully into and asleep in their beds, I pondered a daytime adult beverage. Instead, I wrote a blog post.  Continue reading

Claire is doing great

Just woke up from as good of a sleep as one can hope for in a hospital, cuddling my Claire Bear all night. She came through surgery like a champ, waking up happy after anesthesia, and generally being the most chilled out kid who just had brain surgery anyone has ever seen. Her surgeons say everything went great, and judging by the pressure her cerebral spinal fluid was under, it really was time for us to do this VP shunt. She probably has been having a headache from the pressure lately and we didn’t even know it. Now, her head should stop growing so quickly and the rest of her should catch up.

We’re super grateful for the excellent care we’ve been getting, as well as all the love and support from folks like you. It looks like we will go home this evening.

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