Fundraiser for Luna

A few friends have brought up the idea of having a fundraiser for Luna. The idea inspired, frightened and humbled me all at once. I wasn't sure if I was supposed to get the ball rolling on such a lofty undertaking. But before I could even give it much thought the very generous owner of Gymboree Music & Play in Rye, NH has offered, through Seacoast Mother's Association, to organize one herself.

Her name is Marlow Rahn, and just about anyone who has young kids on the New Hampshire Seacoast, and has brought their kids to Gymboree, knows Marlow.

I'll let her put into words what she plans to do, but for now she asked me to write-up a third person account of Luna's heart defects along with the level of care, surgeries she has undergone and will undergo; and subsequent cost of it all.

The fundraiser will run starting the month of April, which is significant since it will be the beginning of Luna's journey through her open heart surgery.

Marlow has asked me to include a selection of photos as well, starting with her birth, including some post-surgery shots, and of course some fun ones depicting our chubby-cheeked sweetness in all her glory. (the photos are chronologically backwards, starting with the most recent first...scroll down to see her first days of life)

So, for those of you who have been following her story since her birth, this will be a recap; and for those of you just learning about the amazing Lu, this will be a nice introduction.
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In October of 2007 while just 20 weeks gestational age, Luna’s parents learned the baby they were carrying had a series of rare heart defects. In utero it was difficult-because of the complicated nature of her anatomy-for the doctors to determine exactly what they were. But it was known that she had a single ventricle, enlarged aortic artery, either pulmonary astresia or stenosis, and finally dextrocardia, the condition that made it so challenging for doctor's to decipher her heart; an otherwise harmless condition in which the heart is rotated mirror image from what it should be, and located on the right side of the chest (rather than, of course the left, where most human hearts sit).

Luna's parents were given the choice to either terminate the pregnancy at 21 weeks, or continue with the birth and ensuing three operations that would ultimately reroute her blood flow and keep her alive.

On March 11, 2008 Luna was born, otherwise completely healthy and weighing in at 7 lbs even. On her second day of life she underwent open heart surgery to install the BT shunt-and fared exceptionally well. Not a week after surgery, baby Luna was discharged from the hospital and sent home.

At 6 months of age Luna underwent the Glenn operation-a surgery in which the superior vena cava is rerouted into the right branch of the pulmonary artery; giving the overworked single ventricle a break (since esentially the lone chamber must do the work of the missing half).

After two cardiac catheters (both with angioplasty-to enlarge her left pulmonary artery that had significantly narrowed) and countless echo cardiograms, it was determined by Luna's medical team that she has one single ventricle. Her cardiologist, Dr. Gauthier describes best her condition here:

in these complicated cases, it can be hard to tell whether it is a single right or a single left one. Luna is felt to have a single right ventricle. She also has a double inlet- both "AV valves" or inlets into her ventricle enter into the one single chamber, giving her "Double Inlet Right Ventricle", even more rare than Double Inlet Left Ventricle (DILV). Along with dextrocardia- heart in the right side of her chest instead of left- she also has transposed great arteries, meaning the aorta is in front of her pulmonary instead of behind. However, many single ventricle kids have pulmonary stenosis, but she goes beyond "pulmonary stenosis" (pulmonary valve has a very narrowed opening) to what she has, "pulmonary atresia" (valve not open at all, or never formed). Luna will undergo the same surgeries as many other single ventricle kids to re-route blood flow.

Starting next month Luna will undergo more procedures to determine when she will go in for her final and last repair, the Fontan surgery. In layman terms the operation is really, really sophisticated plumbing. Before Luna is operated on she will under-go a sedated echocardiogram and a catheter. Both are exploratory, so her surgeons will know exactly what to expect come the big day.


The cost for these sophisticated surgeries can run a couple hundred thousand dollars each. Most heart kids hit the million or 2 million dollar cap on their lifetime insurance by the time they reach five years old. And Luna is no different. While the family has insurance, budgeting and planning for her care is a moving target. The family's 2010 insurance rates doubled from the year before, mostly because so many claims were placed for Luna's care.

The total family burden for Luna's 2010 care is projected over $20,000. This is before denied claims or out of network issues take affect, which could easily double that amount.

One of the more costly medical needs Luna has is her Synagis shot. During the RSV season, heart babies, young children with upcoming surgeries, and other immune compromised infants and toddlers must get an injection every 30 days to stave off the potentially deadly respiratory disease. The cost for the shot depends upon the child’s weight, and ranges from $2000 to $3700 per shot. Only a few pharmacies in the country administer the inoculation, and all require full payment up front before they will ship the medicine.

The High Cost of a Heart Kid

It's 3am and I am awake. Luna woke for a rare middle of the night milk nightcap and instead of changing her diaper and filling her bottle and then slipping right back into the dream where I left off, I lay awake thinking about...medical bills.

When the Architect and I first learned of Luna's condition, when I was 20 weeks pregnant, the first thing he blurted out was, "we can't afford this!" Or maybe it was, "this will kill us financially". Either way, I winced at his brashness, but deep down inside I knew what he was thinking. We had just finished watching Michael Moore's SICKO and the Architect was terrified. The movie depicted an older couple, both man and woman had suffered cancers. They regained their health, but lost the roof over their head to medical bills.

Now that Luna is 16 months, the reality of having a special medical needs child is sinking in. For the first year of her life, we geared up emotionally to get her through her two heart surgeries and two catheters, and countless testing, shots and doctors visits in between.

Modern medical science of today is amazing. Luna lives a normal toddler life.

But it's the insurance issues (the Architect and I simply refer to it as the Insurance BS) that haunts you and hangs over you for as long as the mind can imagine.

It's not that we don't have health insurance. We do. We have Anthem, and our policy is a HSA. Basically, once we hit a five thousand out of pocket, Anthem pays 100% of all medical bills.

Ha-ha, not so fast.

Most Americans I know have had a good round or two of back and forth over a erroneous medical bill. It's pretty much the status-quo. It's part of the system. Confusing consumers of what has been paid, and what is owed. Usually there is some bogus code that is attached to all of this.... "but what does A9067BS refer to on my bill?? my child did not have a cat scan on March 13th, it was an echo cardiogram!?"

This year alone Luna has cost Anthem nearly 80K. We diligently pay, or the Architect, through his work, pays the out of pocket $800/month for the policy. We then are responsible for the 5K out of pocket, above and beyond the monthly premium, which we have also paid back in February. The Architect's place of work contributes 25% to the policy and then $1500 to the HSA account. And I should note, and this is just an observation; but our insurance went up substantially the year after Luna was born. The Architect's place of vocation couldn't afford the HMO policies for its employees. My guess our family and the family with the child with Leukemia blew the 2009 premiums right out of the water. The pool was too small to sustain the risk. Perhaps I sound bitter, but business terms like 'risk and profit pool' should not be used when referring to children with cancer and serious heart issues. But naturally we can't blame any place of employment for seeking out the least expensive insurance for their employees.

But Anthem doesn't stop there. Every week we are bombarded by medical statements. An HSA statement arrives stating what Anthem has paid out and what we have paid out. Often two statements will arrive in one envelope, stating two different things. The Architect and I pass the statement back and forth, each trying to decode the convoluted bills.

The last series of statement to land in our mailbox have been surprisingly consistent. For Luna's last catheter, we are responsible for $6700.

Did I mention already that we hit our out of pocket max of $5000 and we pay $800 a month for the policy? We fulfilled our end of the bargain, now its Anthem's turn.

So, the games begin. And actually have been for a while. Behind me, on the window is a stack of bills. Smaller bills in comparison, one for $72 another for $616, both bills from the hospitals themselves. Various balances that through "code error" (read complete BS and a practice I have since learned from industry insiders that is used often to confuse consumers), and more importantly, neither are for services that Luna actually endured. They are, in short, bogus claims that we're now responsible for. (and as of this reading, I returned home today, before publishing post to find the $616 bill has gone into collections-this is for a cat scan, a procedure that Luna did not in fact receive!)

I've given up making phone calls as its only an exercise in tail chasing consisting of hours and hours of wasted time, where everyone will be pulled in the mix, including Luna's two cardiologists and the catheter doctor, trying to decipher what a certain charge is for. Rounds of emails and phone calls will be made; to the hospital to Anthem, to the doctors themselves. Each time you're convinced that you've finally made some head way and you won't see the bill again. And then each month the same bill, arrives in the mail.

I think to myself we simply won't pay the $6700. But then worry come January of 2010 will our family have health coverage.

Meanwhile the media buzz has been all about Obama's healthcare reform. Tonight he held a press conference on the very topic. I receive endless tweets to share my story, but wonder where to begin. The opponents views bubble-up through social media in vicious statements and articles to block universal healthcare and I'm reminded of the bumper sticker, Republicans solution to the healthcare crisis: don't get sick! I can't bring myself to even follow what's going on. It's too close to home. All I know is health care is one scary mess.