NB: I have written this essay in hopes that everyone will pass it on to anyone who has ever said they are worried that the Affordable Care Act (ie Obamacare) will make any of us "pull the plug on Grandma"

I have thought a lot more about Rick Santorum in recent months than I would ever have wanted to, and now I have a few things to say. I agree with almost none of his platforms, but we have a shared experience that has put us in a rarefied camp of extreme parenthood.

Santorum's youngest daughter Bella has a genetic disorder called Trisomy 18. The fact that she is alive is is certainly a miracle, but her survival is also a testament to the abilities of modern medical science. When he speaks about his daughter it is apparent that he adores her and is devoted to her, and that her life has had a transformative effect on him. This is why Santorum's views on healthcare completely baffle me.

Somehow Santorum's concerns about the future of healthcare in America- namely that people with pre-existing conditions and disabilities will be subjected to panels that will determine their value as people and whether they are worthy of medical care- have led him to attack the Affordable Care Act and the concept of a public healthcare system. I am really not sure how on earth he believes that private, financially motivated insurance companies would do a better job of covering the disabled (or any of us for that matter) than the government that we elect to represent us.

Here is my own firsthand experience with health insurance coverage for my disabled daughter, who was born with an as yet undetermined genetic condition. At birth, along with her twin brother Roan, she was supposed to be covered under my private self-paid freelancers insurance. Lula was in the NICU for 16 days and underwent a battery of tests. The insurance company immediately paid up for the birth and hospital stay for Roan, who was healthy, but they rejected Lula's bills for the SAME BIRTH and her subsequent NICU stay. Why? They alluded to some sort of pre-approval snafu but really it was because she was "sickly" as one of the hospital representatives told me on the phone. We battled with them for months as the hospital threatened us with an $80,000 bill. Subsequently, we enrolled the babies in a state sponsored HMO. My private health insurance company, now knowing that Lula had state sponsored insurance, told us to pass off the bills to the state.  The hospital told us to do the same so they could get paid ASAP.

At 4 months old Lula got a feeding tube which required feedings every 3 hours 24 hours a day. Every medical professional told us to get her out of the HMO system and onto "straight" Medicaid, which is federally funded. Why, I asked? Thus far her state sponsored insurance had paid for her hospital care with no issues.  They all warned me: once it adds up to a certain amount the HMO will simply stop paying and we were getting there fast. We lasted about 4 days with the feeding tube before we realized we needed in-home nursing care.  The HMO would not approve the hours we needed so we hired someone out of pocket.  We burned through over $20,000 in three months paying a baby nurse who was not even medically trained.

The first step to getting Lula straight Medicaid was to find a doctor who actually took it.  No doctor at any of the normal pediatric offices took it because there is no requirement that you have to.  Medicaid pays very little to the doctors and the paperwork is ridiculous.  But it was our only option.  We wound up with a nurse practitioner at the Clinic at Bellevue.  And there we found all of them: Rick Santorum's babies.

All of those kids - the ones with Cerebral Palsy, Trisomy 18, Down's Syndrome, Autism, and a menagerie of birth defects and genetic abnormalities. There they sat waiting in an endless line in their $4000 wheelchairs hooked up to ventilators, feeding tubes, oxygen tanks, suction machines.  Some of them had come from home via ambulance and many of them with in-home nurses. And every last one of them was on Medicaid.  I had never seen any of them at the pediatrician's office that my healthy son went to.

Once Lula was on Medicaid we were able to get night nursing covered.  Every new EEG test, every MRI, every hospital stay, every at-home medical device was covered for our gorgeous but deeply sick baby.  One moment she would improve and seem stable, the next day she would be ravaged with pneumonia and we would have to call an ambulance. I stopped working and my husband tried to work as much as possible but as a small business owner he had to work far less than he needed to support us.   My mom, herself a nurse, moved in to help us care for our babies, but without having all of Lula's medical expenses and nursing covered by Medicaid we would have gone bankrupt within months.

At 16 months old Lula was diagnosed with Infantile Spasms, a kind of seizure, and needed an injectible drug called ACTH.  The neurologist asked nervously, "What insurance does she have?" and when I said straight Medicaid he looked relieved. That's because ACTH is running in the neighborhood of $30-40,000 per vial and Lula would likely need 5 or 6 vials. Our private insurance, who was fought us on the NICU stay, can you imagine what they would have done?

In the end Lula's condition worsened significantly.  She contracted RSV and pneumonia.  The doctors tried everything short of a ventilator to keep her alive.  My husband and I made the agonizing decision not to intubate her.  It was the most crushing, heart -breaking decision of our lives but we did it for Lula. Her quality of life was such that further interventions would have simply been forcing her to stay alive for our sakes with considerable pain to her.  We were given all the time and space in the world to make the decision privately and as a family. Lula passed away in my arms.

Santorum loves to pontificate on the value of all human life. A lot of people were offended when he spoke of how Bella's condition means that she can do "nothing but love", a phrase considered demeaning to people with disabilities. I know exactly what he meant, though, because my baby was exactly the same. She couldn't walk or talk, hold her head up or even smile. All of her expressiveness, her astonishing ability to connect, was channeled through her force of love, and with that she redefined for me what a meaningful, valuable life could be. I really can say that I know exactly what he is talking about when he speaks of Bella's presence in his family.

What he never discusses is her daily care (at least not that I could find anywhere- anyone who knows otherwise speak up!) and how it is paid for. The truth is that as far as their financial contributions to this country kids like Lula and Bella are total financial losses. Their value to us is infinite but non-monetary. They will cost heaps of money to be cared for their entire lives and will never pay in to the system.  There is no reason for a for-profit insurance company to cover someone like Bella or Lula. Even someone as wealthy as Rick Santorum would very quickly be in financial straights if he had to pay out of pocket for round the clock nursing care, recurrent ICU stays, and hours and hours of occupational and physical therapy.

I personally have no ideological preference for whether health care should be paid for via private companies or the government as long as it is paid for by someone, but I simply do not see how or why private companies would ever have a market-driven incentive to cover the disabled.  And my experience seems to confirm this. To recap:

Private Insurance : Paid only for healthy twin, rejected sick twin

State HMO: Paid what private insurance wouldn't cover initially, but wouldn't pay for extensive services needed for a medically fragile child

Federal Medicaid: Most comprehensive coverage of all, really the only option we had

I have many, many issues with the Medicaid system. It's cumbersome, sometimes illogical (you can't see two doctors on the same day as an outpatient?!) and sloowwwww (Lula died before she could ever enjoy the special needs chair that she was fit for 6 months prior). The costs of medical care are outrageous and pharmaceutical companies are running the show.  But while we experienced many problems along the way we were never denied coverage.  We were never subjected to death panels or told that our daughter's care was too expensive for what she was worth.  We certainly encountered doctors who failed to see Lula's interminable value to our family, but their lack of imagination was never related to the cost of care. 

I am just as fearful of a system where people make business decisions to judge the value of a person's life.  No one but family, those that love and care for someone who is ill or disabled, should ever be able to decide what is best for them.  I don't really see how we are justified in spending trillions to defend our people from outside invaders while leaving those being attacked from within by disease or their own genetics to fend for themselves.  I am not sure what better definition of freedom there is than the freedom to make our own decisions about healthcare for ourselves and our families.  If we really believe in individual rights we need to back them up for the most powerless in our society by paying for their care because ultimately every single one of them has something incredible to contribute, even if in the most mysterious and circuitous way. I am sure Rick Santorum agrees and if he does he should devote himself to finding a way to pay for every one of those babies that are just like his.