Monday, March 1, 2010

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.

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.

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